Forever Boy: A Mother's Memoir of Autism and Finding Joy

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Kate: OK, so I'm really bad at that. I have none. I mean, fully honest is I literally have the fourth baby changed everything. I would say if I was to have one, I would want to get out to dinner with my husband once a week, except I would need to find help and I don't have that. So I could spend more time with my husband alone without kids. And then I would love to go for a walk every day. Oh my gosh, I would love that. But I'll be honest, I don't have any right now, and it's starting to show and it's wearing on me. What did you know? If I were to describe Cooper’s toddler years with one word, it would be lonely, a word that I didn’t know before having a baby could be associated with motherhood. What do you call a child diagnosed with Diabetes? Most say they are diabetic, otherwise, it is sooo demeaning to that individual being put a label saying I’m one with. . .

Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host. Autism Mom, Behavior Analyst, and bestselling author Dr. Mary Barbera. Forever Boy by Kate Swenson may appear on the surface to be the story of a Mom with an autistic child. But, it is so much more than that!Kate’s heartfelt, candid narrations of her experience have drawn 900,000 followers to the social media accounts of her blog, Finding Cooper’s Voice. Her memoir… lays the emotional turmoil of it bare….the message she shares – of emotional honestly leading to personal growth resonates far beyond autism to reach anyone for whom life has thrown a curveball…..her recounting the private moments that fracture a marriage, and the ones that repair it, is among the book’s most powerful aspects” – STAR TRIBUNE Being an Autism Mom is really hard. I won't lie to you and tell you how "great" it is, because it's been a huge struggle for me. It was much easier when my kids were younger and I could spend all day taking them to the therapy center for hours at a time. But now that they are 6 and 8 things are much harder.

And opening up and being honest about our day-to-day struggles and my heartache didn’t come easily to me. So I had pulled away from most people. My friendships were suffering. I sugarcoated the challenges with family. I wanted to believe if I just kept going, and kept doing more for Cooper, that one day, he would get better. But it wasn’t happening. Autism had woven its way into every aspect of my life and had consumed me. Self-care. It’s a buzzword that makes most special-needs parents cringe. We don’t have time for extras in our world. Once I counted Cooper had on average seven additional appointments a week on top of school and being a kid. Think of a combination of speech therapy, occupational therapy, play therapy, feeding therapy, medical appointments, and appointments with his social worker. I also had another son to care for, and a house to manage, and a job to work. Self-care was not a priority. Mary: Yeah, yeah, well, when you think about it too just to point out for the listeners in the show notes, this will be episode 170. I did a show with an expert on Apraxia. We can link in the show notes. I did one on our video blog on intellectual disability, which Lucas also has intellectual disability. I think I even have something on anxiety so we can link those in the show notes just for helpful information for people. But you're right, it does become alphabet soup. So you've had a lot going on in the last two years. I first interviewed you right after we were shut down. And so you had a new addition to your family, first of all. Mary: Right, right. And I totally agree with that. You know, people, you know, moms. And then in the beginning, I was like, you know, gunning for every treatment and measuring everything and just, you know, and at some point you have to like, go like, wait a second, I have my own life to my own dreams of my own. You know, and I have other children and I have a marriage. I have family and friends. I have a career. I want it. I remember somebody saying once when Lucas was, I don't know, around 10, probably Cooper's age. And like, you know, I was fighting with the school district at the time, I was in due process and one of my behavior analyst friends said, Why don't you just homeschool? I'm like, No, I'm not, you know, I don't expect perfection. I just don't want the bar to be, you know, lowered. And I know what he needs, and I don't personally have to be there doing that. I don't think that's good for either one of us. And so, no, I'm not, you know, I'm not going to throw myself overboard to, yeah, to, you know, have a life that's not good for me. So I love the fact that I mean your, you know, many years behind me and you and you were saying about how nothing falls into your lap. I mean, teen and adult services definitely aren't going to fall into your lap. And then XYZ like this constant fight?

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She turned those frustrations and frights into being a strong supportive mother who wouldn’t change a thing about her son. There are some heartbreaking stories in this memoir about Cooper being left alone in a classroom while all the other kindergarteners are off at a Christmas party, put in the audience while the rest of the kids sang in a holiday carol-type situation and punished by taking away his recess. Kate: And that's something you'll hear a lot about now is that it is the spectrum, and there's a lot of anger around the spectrum and what it is, and that's how it was described to me in the beginning. It was this line, the stark line, and it's like, you know, yeah, where you want to be and this is where you are. And I don't think it's like that. I think it's different.