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

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Mary: Yeah, right. And that comes with a double edged sword because the more followers you have, the more people with, you know, that aren't going to like you, the more hate you can get, the more famous you can get. And I think you did outline that a little bit in your book how you did have a viral video. Mm-Hmm. I think we talked about it last time and it went viral, right? And that's...

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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. . . Kate: I'm at 760 now, which blows my mind because I say this all the time. No one ever thinks they're going to have a following on social media. I have a group of men and women who are writers that are part of this blog group that I have, and I might just, do you know you could go viral and you could have a million followers and they're like, No, and I'm like, Yes, it's real. Kate: It's the memoir style story of us, so it starts out with me as a little girl, which is the opening and how I just dreamed of being a mother and I always played house and babies. I think I was like 12 years old and went right to babysitting and nannying. And I start by talking about what if someone would have told me that my first child would be disabled? Would it have changed my way of thinking? And there are no crystal balls, so we don't we don't know that, and I never thought I would have a child with a disability. I'm always the first to say that because it's just I had no idea that that could happen. And then it goes into my husband. I had a miscarriage first, and then we had Cooper. And really, it is just the ups and downs and turns and twists of his diagnosis, which you think it's going to be so easy. You know, my child has this going on. This is the answer, but it's not. There is no blood test. There is no marker. There is. And we really had to fight for that diagnosis. And then, you know, over the years of trying to get him help and services, nothing fell into our lap. It was just a constant pull and, you know, push and pull for everything. And then, you know, the climax of the book is really I realized I was missing a lot of his life, grieving the things that he would never do. And I had to change. I just had to change who I was. Me, not him. He was fine. He was exactly who he was supposed to be. I was the problem and changed my way of thinking, and I adopted this tagline Find the Joy, which is cheesy to some people, but I had to live in this happy place because it was eating me alive. 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. That’s when I realized what a true friend was. Someone who would always love you—the imperfect you, the confused you, the wrong you—because that is what people are supposed to do.” —R.J.L.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.

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Kate: And you just said it's been two years since we last talked. I can't believe that that's crazy. So much has happened. Kate is a mother I truly look up to, and her son Cooper is a child I always root for from afar. I’ve seen him achieve so many things with the support of his family and his growth goes to show that our children are lifelong learners and capable of so much more than we give them credit for. And seeing Cooper reach new milestones is a testament to how hard his family fights for him by advocating and educating others about autism. But in time I learned not to let these people limit my child’s future. Professionals are here to help us and often they do. But they don’t have a crystal ball or the ability to predict a child’s future. Regardless of whether they end up being right or wrong, the one thing we can’t let them do is destroy our hope. Kate: I have and I've never. And then Joshin and another one. So there's Care.com and Joshin. I haven't ever found anyone on any of those. When a premarital counselor asked Swenson and her boyfriend at the time, Jamie, how they would cope with the challenges of caring for a child on the autism spectrum, they balked. “ What a silly question,” she writes. “That would not happen to us. He went on to briefly talk about the stress of hav­ing children, and how a child with special needs intensifies it. I remember not being jarred by the question, not in the slightest. I mean, we were healthy and invincible.” After suffering a miscarriage, the couple’s second pregnancy resulted in Cooper, who could not be comforted by touch. Cooper mystified the author and made her an outsider to the “exclusive club” of mothers with so-called “normal” children. As she struggled to make sense of her situation and the attendant personal and financial challenges, Jamie distanced himself. Though they divorced, they became more committed to giving their children—especially Cooper, who had been diagnosed with severe, language-impeding autism—“their best life.” Finally able to work as a team, she and Jamie fought doctors and schools to give Cooper what he needed, and they remarried each other. Despite their loving care, Cooper was subject to fits of rage so violent that they feared for the safety of their other children. The author, creator of the blog Finding Cooper’s Voice, finally decided to medicate Cooper to ameliorate the anxiety that stalked him, despite her fear that drugs would turn him into a “zombie.” The result was miraculous. Much calmer in general, Cooper began to build a small vocabulary that helped him emerge from the lonely world in which he had been trapped. This wise, inspiring book will appeal to not only parents of children with autism, but anyone interested in stories about the selflessness and endurance of maternal love.

Kate: Oh yeah. And I mean, any mom, I think that shares on social media, you will get shamed about your kids dirty noses and the sugar they eat and dirty car seats. It doesn't matter what it is, but when you have a child with a disability? Your questions get a little bit heavier than, you know, should I take the pacifier away, should I try medications or do I visit this natural path or do I in? And those are questions that seem to anger people sometimes or potty training questions. I mean, it's hard to talk about those things openly and honestly. So when I started this paid group, it was really so I could have a place to say, you know, my kids got the best of me today. I'm exhausted. I'm tired. What do you use for anxiety? All those different questions. And that's how the group is using these mommas. Ask each other these things and they're not shamed or yelled at or bullied. And that's worth every penny you think. I love the friends that you don’t see for days, weeks, even months and the bond is still strong as ever.” —Unknown Mary: Yeah. So you have Cooper, who's 11, and then Sawyer is how old? Nine. Nine. So they're two years apart, and then you have Harbor, who is three. You are my best friend, my human diary, and my other half. You mean the world to me, and I love you.” —Unknown