When You Realize It's Not Just Your Child That Has SPD

By Sarah Norris & Carrie Einck

When we work with families at STAR Institute, we often come across parents who just get it. Parents with SPD get what’s going on with their kids, because it’s their life, too. When we think about parents like that, Laura is someone who immediately comes to mind. Her SPD story started when her son was diagnosed with SPD at an early age. She brought him to STAR Institute before we started the teen and adult program. As she went through the process of learning about SPD and understanding her son, Laura had a realization: “This is me! Wait a minute, this is describing me!”

As you may have seen in our Facebook Live videos, we talk all the time about how important support and understanding are for teens and adults with SPD. As we got to know Laura and her sensory “superpowers,” we became huge fans of her wit, openness and perspective. She is always striving to learn more and to be a caring advocate for her family and others with SPD.

About a year ago, Rachel Balderrama, family counselor at STAR Institute, interviewed Laura about her story. If you attended the Parent Workshop at our Symposium last October, you saw clips of her interview in Rachel and Sarah’s presentation. Here are some excerpts from their inspiring interview.

RB: It’s so valuable hearing about your experiences and your journey. There’s something so comforting about hearing a story like yours, because it can help families know they’re not the only ones going through something like this. I’d love to start out just hearing about your journey in learning about your own sensory issues.

Laura: You know, I was just always very particular about certain things. Growing up, there wasn’t any sort of information about SPD. I was my mom’s fourth child born within five years. All of a sudden, she had this kid who was just so much work. She used to go to seminars for The Strong-Willed Child. I was so demanding. Everything had to be tight – tighter, tighter, tighter (dresses, shoes). I don’t like it when things move on my skin. I had things like that forever. I didn’t ever know that wasn’t normal, or not typical. (laughs)

When my son got diagnosed and I started learning more about [SPD], I remember filling out all the forms for his evaluation, and I was like, “This is me! Wait a minute, this is describing me!” It was very eye-opening. I had the initial sense, “There’s something wrong with me! I’m damaged, or I’m not normal, whatever that is.” But that was short-lived. Once I got through the initial shock of it all, I was so relieved, because it explained so much. I was able to say, “Oh, that’s why I freak out if you touch one hand but not my other.” I have to [even it out], or it throws my whole body off. It gave me that sense of, “Oh, I just feel my body in such a different way, and that’s okay. There’s nothing wrong with me, I’m just built a little differently.” [That knowledge] was such a relief. It became something that gave me comfort [to be able to say], “Oh, that’s what’s happening.”

RB: Looking back, how do you think your challenges affected how you grew up?

Laura: I had the benefit of being the fourth kid in five years, so I had neuro-typical older siblings, so I knew how I should behave. I knew what was socially expected and acceptable and all of those things, and I think that helped me blend well. But I also remember a conversation I had with my sister when I was 15. She was 17. I was a freshman, she was a junior in high school. She was “Ms. Popularity” and I was the geeky little sister. (laughs) I asked her, “How do you have so many friends? Why do so many people like you? Why is that so easy for you?” Because it never was for me. I always had a couple of friends. There were a couple of kids I would hang out with at school, but I never had a core group of friends. Also, once school was out, my phone didn’t ring. But I also didn’t call anybody else. My friends were very much out of sight out of mind. I would just go home and do home things. I didn’t necessarily feel like I was missing anything, except I could see my sister out doing, doing, doing, doing, and I was like, “Why is she doing so many things?” It just didn’t make sense.

When I asked her why it was so easy for her, she said, “I see you at school, but you’re always looking down. You don’t look at people. If you don’t see people, they’re not going to see you.” I remember thinking, “You’re crazy. Whatever.” Then, the next day at school, I noticed I was looking down while I was walking down the hall. I’m so visually sensitive. When I was walking down the crowded high school hallway, and there’s hundreds of kids and they’re all bumping, throwing paper wads, with the fluorescent lights, I didn’t want to see it. When I realized she was right, I started to try to look up. It did not feel natural at all. I tried to pay attention and look at people. “Maybe they’ll see me if I see them.” It got better, and it got easier. I had to work at it. It wasn’t something that just came naturally to me. I come from a family of outgoing, talkative people who have never met a stranger. I was the only one that was not like that. But I’d seen it and I knew what it was supposed to look like. I just had to work harder to do it.

RB: So, being a teenager is already difficult enough. As teens, we all have to figure out who we are and how we fit. As a teenager growing up, not knowing about your sensory issues, how do you feel your sensory issues impacted how you thought about who you were in your family?

Laura: It was clear to me that I was different. I just didn’t know why. I think I spent my whole childhood burning all my calories because I was flipping and flopping everywhere. I was a gymnast. My mom used to say, “Laura doesn’t walk anywhere, she flips there.” I think because of that, I had a teeny-tiny frame. When we were in high school, my sister looked like a growing young woman, and I looked like a ten-year-old boy. I definitely had self-esteem issues growing up because I could never measure up to my sisters. Not only with my sensory self, I physically didn’t measure up to my sisters. I was the smaller, kind of skinny, knees and ankles girl. So not only did I have the physical difference, where I didn’t feel like I matched up, but I couldn’t even socially keep up. So, I became a jokester. When I get kind of uncomfortable, I’ll crack a joke. Or I’ll try to make it funny and try to lighten the tension that maybe I’m the only one that feels, but for some reason, I’m feeling it [in the moment]. Sometimes it worked growing up, sometimes it just came off as weird. (laughs)

RB: You have a really unique perspective on SPD because you are in real time, seeing it. You’ve lived it, through all the stages, and now you have two kids at different ages. All three of you have different nervous systems and react to things in different ways. What is it like to see that?

Laura: My kids are so different. I mean, completely different. My son got diagnosed very young because he was not developing on target. He never learned to crawl. He did a weird leg scoot thing because crawling wasn’t going to happen. He wasn’t talking. He wasn’t acknowledging that I was in the room. For him, it was so obvious there was something happening. We were very fortunate to work with a speech therapist through early intervention who had worked for STAR Institute. She was very familiar with sensory issues and was the one who told me his speech problems were coming from his body. They were body problems. She got us an OT consult and the OT confirmed it was his body that needed to be worked on. He had such visible challenges.

My daughter never did. In hindsight, now that I know what I know, she did. I was young when I had her, and I was living in Central America, so resources were much less than what they are here. I was alone. I didn’t have my family there. I had this baby who didn’t feel full as a baby. I would nurse her, and every feeding was about an hour and a half. Then she would profusely vomit, and then nurse again. Her doctor said she had reflux and that she would stop when she was full and to be sure to keep feeding her because she needed to eat. My son is the opposite. He doesn’t feel hunger. He never wants to eat. When I was nursing him, I thought I wasn’t producing enough. He was fine, but it was so different than my experience nursing my daughter. I don’t feel thirst. I can go all day and be brushing my teeth at night and realize, “I don’t think I drank anything all day.” It’s interesting how we’re all so different.

My son would have meltdowns and slam his head against the wall. I remember he would seek something hard, and I would put my hand in front of his forehead to shield him, and he would keep scooting because he was going to find a hard surface to slam his head on. He would have meltdowns that seemed to last hours. My daughter never did. She was super easy going, the most chill kid ever. She was clingy, and she was needy, and on top of me all the time. Whereas my son would really prefer if you never touch him. He’s perfectly fine with a high five and a thumb’s up.

RB: For your daughter, have her sensory issues changed as she’s gotten older?

Laura: Yes. When she was little, she was clingy, clingy, clingy. As she has gotten older, she has more of that startle response when I come up and put my arm around her. If she’s upset, my instinct is to hug her (even though I don’t particularly like hugs myself). I want to console her, but she doesn’t want me to touch her. She was never like that when she was little. I think that’s come with puberty. I think that was the same for me. When I was little, I loved snuggle time with my mom. Now, I constantly tell my mom to stop touching me. She is super touchy, and I have to tell her, “That’s enough.”

RB: Do you see similarities in how your sensory issues impacted you in how you see them impact your daughter?

Laura: Yeah, I do. In the same way I said my friends were out of sight, out of mind, it’s the same for her. Because I’m aware of that, and I know how that feels when you don’t get why all your friends were out this weekend but you weren’t there, so I’m the one mom in the world who says, “You need to be looking at your phone. You’re not texting enough!” She won’t even respond to her texts, so I’ll look at her phone and see group texts about plans and tell her, “You have to chime in.” I tell her, if you don’t make yourself known, you’re not going to be seen either.

RB: What makes that hard for her?

Laura: I think it really comes down to her not knowing how to get in there, the right thing to say. She has a core group of friends that are awesome. She has what I didn’t have. She has one friend in particular who is amazing. She really wants to understand my daughter. When I was explaining it to her what SPD is, how we feel things differently, she said, “It’s almost like you guys are the next evolution in man. You’re what’s coming next. You guys are like more evolved and more in tune with the world. That’s awesome.” I think that made my daughter feel good. When she first got diagnosed, she didn’t want anyone to know. She was embarrassed, she was ashamed, she was all those things. Thankfully, she got over it pretty quickly. Before I knew it, all her friends were totally aware, and it was good. I think she has some of the challenges I had as a teenager, but I have my eye on the situation and I will say, “You need to respond,” [when people text her].

RB: For you, how do you feel that having sensory challenges has made you stronger?

Laura: I think I see the world differently. I see more than the person next to me might see. I feel more. I’m also more understanding of people who are having a hard time for whatever reason, whether it is a sensory issue or dyslexia or something else I don’t have. Even though I don’t have that particular challenge, I know what it feels like when you feel like your brain should be doing something that it’s just not doing- or it’s doing it backwards, upside down, or whatever. It’s just that inner understanding of, “We are all so different.” I don’t think there’s somebody out there who could be labeled as a “normal person.” I don’t think that exists. I think everybody has something, whether they know it or not, that is a challenge for them. That, to me, is the biggest thing. For example, I’ll be playing on the playground with my son and other kids, and I’ll see a kid who is struggling with something. Even if I don’t know why, I just have the understanding of, “Let’s help that kid get his foot up there,” or, “Yeah, man, you’re having a meltdown because your cup got dirty. I get that! I hate that too! Let’s clean that up.” That’s what I like the most about [having SPD]. I feel like, whether I like it or not, I have to be understanding, because we are all so different and not one of us are broken, just different.

RB: In terms of advice for others, is there anything you’d like people to know about sensory processing disorder or your sensory challenges?

Laura: The biggest things that I always want to say are, “It’s scary at first because you don’t know what it means. Once you understand it, even just a little bit, [the better you’ll feel].” You know, I’ve been on this journey for years now and every time I walk through [STAR Institute’s] doors, I learn something new. The more you understand it, the more peace it gives you. It helps you understand yourself, why you’re feeling [a certain] way. Like, why do I get tunnel vision in this scenario? Why do I start shaking in this scenario? It starts to help you understand it, and then you know to calm yourself. “Activate coping mechanisms,” is what I always tell my kids. “Hey! Activate coping mechanisms. It’s very loud in here everybody!” And we do. That’s all we can do.

You start to feel if it’s your body screaming at you, or sagging, which can be the case sometimes, it helps you to recognize what it is that’s going on. While it never goes away, you learn to cope with it and you learn it doesn’t have to be that big a deal. You know, maybe, I need to take really deep breaths when my daughter makes me go into Forever 21. (Ugh, I hate that store, so much stuff in there!) You just kind of learn what your body is saying and then it’s cool. Just knowing this is what’s happening, and this is why. I can’t even tell you how much this has helped. My kids react differently in different situations. I can go in prepared. I can prepare my kids. For my young son, I know I need to tell him the steps, the experiences he will have. “I know it’s hard, I get it, it’s hard for me, too. Game face, let’s go.”

RB: What’s has been helpful in managing your SPD? Is it just understanding it?

Laura: A hundred percent. It’s been huge. Just knowing this is why this is happening, I can’t even tell you how much that has helped. For me, it’s empowering just to know, this is okay. I am not a weirdo. There’s nothing wrong with me. This is okay. Unfortunately, I’m still so much better reading my children than myself. Now, just finally starting therapy for myself has been an interesting change, because I’ve learned everything about me through my kids and through the education I get at STAR Institute. The [education] may be [about] my children, but, you know, it’s the same. It explains me. I recently had an episode at an allergist appointment. I held it together through the appointment. I had to, as an adult, and they were professionals. When I left, I couldn’t stop coughing. I was just in sensory overload and couldn’t control my cough. I couldn’t control my body enough to realize I had been under stress and it was meltdown city.

RB: You had an adult meltdown that was the equivalent of children holding it together in school and then losing it the second they’re in the car.

Laura: Yeah, it was awesome. It took me a while to realize what had happened. That’s what made me realize I need to figure out my body. If I had realized what was happening, I could have just asked them to turn the light off in there. That’s when it occurred to me that I should learn about me and my specifics. As much as learning about my kids has been helpful to me, and a lot of it applies, the one thing I can’t know is how they feel. That’s the one thing I haven’t been able to read about myself just yet, that interoceptive thing of what is going on in[side]? I know I’m tense, but I don’t know why. So often I’ll realize my whole body is clenched and I have to tell myself to relax and figure out why I’m tense. What is going on in the world around me?

RB: What a journey it is, even for an adult. We expect so much from kids, but our own ability to be aware of our body is doing takes a lot for us to slow down and identify. Being intentional and conscious in figuring out where [tension] is coming from, is a journey for adults with sensory issues. You have good perspective on how this affects an adult. It helps us think about the journey our kids and teenagers go through on the way to becoming aware of themselves.

Laura: My daughter got really aware, really fast. She started her treatment here, and I saw such drastic changes. It’s not that she’s not getting the sensory signals, she is, but she’s learning to recognize them. In a ridiculously short amount of time, she’s learned how to manage [her symptoms]. Before she learned what helped her, she was so forgetful. Now that she knows what helps her focus, she can do tasks so much better and can do a more complete job.

RB: What is one amazing thing (for your son, your daughter, for yourself) that has formed who you are as a person?

Laura: I think the message that I want my kids to have, so I’ll share that, is: “We just are who we are. We are exactly who we were meant to be.” It’s sometimes a little bit hard to navigate the world around us, not impossible, but a challenge. Ultimately, I think learning who we are and what makes us the way we are gives us that sense of self. That is who I am! I am overly stimulated by certain things. I don’t feel things the way you think I should, but that’s who I am and I’m never going to not be that and that is always okay. That is the theme of my home. We are who we are, we are all different. Even within our family with the same diagnosis, we are all so different. It looks so different on all of us. And that’s okay. I think we’re pretty awesome.

RB: Absolutely. I one hundred percent agree.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

 Sarah Norris, MS, OTR/L 

Sarah Norris Sarah is a licensed and registered occupational therapist with  experience in inpatient and outpatient pediatric hospital, school-based, early intervention, summer camp, and private practice settings. She graduated with a Master’s degree in occupational therapy from the University of South Alabama and spent several years working in Tennessee and Georgia before coming to Colorado.

Sarah is committed to helping individuals with Sensory Processing Disorder and their families experience life to the fullest. Sarah is trained in DIR/Floortime, Integrated Listening Systems (iLs), Interactive Metronome, Handwriting Without Tears, Therapeutic Listening, Brain Gym, NeuroNet, ALERT program and SOS feeding interventions, among others. She has extensive knowledge and training in Sensory Processing Disorder treatment and evaluation through participation in the Level 1 Mentorship program with the STAR Institute. She loves to read and is always open to learning new ways to help the clients and families she works with. Sarah is married, has two young children, and she loves exploring all the adventures Colorado has to offer in her free time.

Rachel Balderrama, M.Ed. 

Rachel brings to STAR Institute a breadth of experiences and skills. She graduated with her Bachelor’s of Arts from the State University of West Georgia. Rachel received her Master’s in Education in School Counseling from Georgia State University and is a licensed Professional School Counselor. Following three years of work as a high school counselor, Rachel served for two years in Burkina Faso as a Peace Corps volunteer, working in the sector of Girls’ Education and Empowerment. Due to this work, she founded and is the Executive Director of a nonprofit organization dedicated to raising awareness about gender equality and building schools in poor African communities.  Prior to coming to STAR Institute, Rachel worked in community mental health with families of children and teenagers who were in the foster care, adoptive, juvenile or truancy court systems.  This multi-faceted work included conducting clinical assessments, providing consultative services for Child and Protective Services, and providing counseling and psycho-education for families and children. Rachel conducted seminars and mentored other staff on assessment procedures. Rachel has completed the STAR Institute Intensive Mentorship Program Level 1. As a STAR Institute Family Counselor, Rachel is passionate about educating, supporting and empowering families as they seek to improve quality of life for their children and themselves.