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? You are my best friend, my human diary, and my other half. You mean the world to me, and I love you.” —Unknown 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. As we walked out, the chatter of five year old voices leveled me. I cried the whole drive home again. It wasn’t supposed to be like this. This was supposed to be such a fun day.

FOREVER BOY | Kirkus Reviews

My six-year-old son had severe, nonverbal autism. It’s the kind of autism that no one talks about. The kind that isolates families. The kind that doesn’t sleep. The kind that forces a person to fight for every possible service and basic right. The kind that is completely and utterly depleting. The kind that feels hopeless at times.. She turned those frustrations and frights into being a strong supportive mother who wouldn’t change a thing about her son. 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?

Do you agree with this statement? “I want to be less awkward”

When you’re in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, ‘Damn, that was fun.’” —Groucho Marx

Forever Boy Audiobook by Kate Swenson | hoopla

Kate: We do. And we have two PCAs that we love, but they're at college right now. So finding help here is one of the problems that we have. We've never really figured out the mystery of finding help and good help. Kate: Yeah, there's lots of them, so we have them on the Kindle. That's so funny that you said that. Yes, that has been life changing, and we have multiple devices in our house, so one of them doesn't have it. And yesterday I said, turn it down probably 50 times because he was being very he had an anxious day, but the noise? I go crazy with the noise. Kevin found out about that one game through one of his friends. It was called "Da Rats" and was about a mad scientist creating an army of mutated rats to take over the world. His mother made him go to the mall if he wanted it, since they were going dress shopping for his sister Susie's prom. Kevin hated the idea, since he would be forced to sit through what could be hours of dress shopping, but he felt the game would be worth it. I hope we’re friends until we die. Then I hope we stay ghost friends and walk through walls and scare the shit out of people.” —Unknown Best friends are people you don’t need to talk to every single day. You don’t need to talk to each other for weeks, but when you do, it’s as if you’d never stopped talking.” — Unknown

Do you agree with this statement? “I want to be more likable”

Real friends don’t get offended when you insult them. They smile and call you something even more offensive.” —Unknown Mary: And you did. Besides Finding Cooper's Voice. I mean, one of the ways you coped with those viral videos and just a lot of the negativity was you started a small paid group within Facebook called Coop's Troops. And I know I've been a part of it since the very beginning, and I know many of my listeners have also joined because I see them there. And that's a really nice small group for very little fee. Facebook charges to have a more intimate group where, I mean, there's still a few thousand people in there, but it's a more intimate group. And I mean, I think you're very positive about that group and feel supported there.

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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. It’s still lonely, five years in. Your best friends may not know what to say and say nothing/ghost you. You feel ashamed or in my case ready to put anyone who says anything shitty about your kid on blast. If you have a best friend that you can talk to about anything and they won’t judge you, never let them go.” —Unknown The advice at the end was a nice bonus. She’s been through some things. Can’t think of another book on autism that mentions the literal sweat. This book was so hard and made me cry so much. But I’m glad I read it. You can’t hold your grief in forever. Sometimes that is the hardest thing. Those awful days where you feel all alone. Questioning how you will make it through. Hating that everyone calls you strong. Friends and family may fail you. Things look bleak. You feel your feelings and then you go give your kid a hug. And start all over again. Thank you for still being my friend, despite the fact that you are completely aware of every terrifying, raunchy, explicit detail of my life.” —Unknown

Literature Text

Kate: Yeah. So our family, we're our family of six, which is hectic and crazier than I ever thought it would be. I hope we can get some sense of, it sounds so silly, but we're just like up and down every day. Every day feels like a new day from the day before. We need to get some sort of consistency and schedule in our life. So that is our goal as the family. Goals for Cooper, I really want him to be able to go to restaurants, fly on an airplane and go to his brother's sports games. Those have been my goals for years and we're doing things to get us there. We're not there yet, but he is making so much progress. And then for me to get through this book launch. And I don't know what's next for me. I really don't know. Keep growing Coop's Troops. I think I just love that group. It makes me so happy. I don't know if I'll write another book. I really don't know, but I think every author says that, but I really don't.

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It is one of the blessings of old friends that you can afford to be stupid with them.” —Ralph Waldo Emerson Best friend: someone you can only stay mad at for so long because you have important things to talk about.” —Unknown Never leave a friend behind. Friends are all we have to get us through this life—and they are the only things from this world that we could hope to see in the next.” —Dean KoontzKate: 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.