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

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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. Mary: Yes, yes. So I always start out with the same question. Now you are on Podcast 70, which we're going to link in the show, notes MaryBarbera.com/70. And we always start out with, describe your fall into the autism world so you can get the real detailed version in 70. But can you just for people who haven't ever heard of you? Kate Swenson, I don't know where they've been, but can you just tell us how you fell into the autism world very briefly. 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: 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. 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.

Kate Swenson

Mary: The mom of Cash's Voice on, and I'm going to have Jess on in a few weeks. So. So it really is a great community for networking, for information and for a lot of support, which is great. So would your book Forever Boy? Is it more fiction nonfiction? Is it the same kind of writing that we expect on Finding Cooper's Voice and Coop's Troops? What a talent, what a career, what a life, and what a treat to relive it all with this most down-to-earth of demigods.

My team have worked tirelessly with internal and external colleagues and partners to gather and present the evidence in this case. Their collective hard work and dedication led has helped achieve justice for the young boy and his family. Having been through so many changes, experienced so many emotions, and seen so clearly what autism can do to a mother and a family unit, Swenson has written FOREVER BOY to enhearten other parents."Faced with the constantly changing, often escalating challenges of raising her first-born son Cooper, Kate Swenson’s poignant account of life with an autistic child will encourage other families to go the extra mile. 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? When Kate Swenson’s son Cooper was diagnosed with severe, nonverbal autism, her world stopped. She had always dreamed of having the perfect family life. She hadn’t signed up for life as a mother raising a child with a disability.

I was in denial when we first started looking for help and evaluations for my son. I have several cousins who are autistic, and I always said that I can never be that mom. It's just too hard. But God definitely has a sense of humor and handed me 2 autistic kids. I never wanted this life, but yet here I am, wading through an ocean of doctor/ therapy appointments, IEP meetings, and never ending paperwork. The fact that Harvey will always be 17 is unbearable to think of and even harder to accept. Please hold your loved ones tight, all the minor things we worry about are irrelevant, life is so short and can be so cruel. 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? It is the inspiring story of a Mom navigating an autism diagnosis, seeking supports, inclusion and education for her child, while also navigating motherhood, marriage, relationships, personal struggle, sorrow, hope and joy.By the time Cooper was three, Kate and Jamie were involved in meetings and consultations before being given a diagnosis of autism. In fact, one professional coldly pronounced Cooper’s condition to be the worst she had ever observed. Yet he was their son, their cherished baby boy, and Kate was deeply attached to him despite the exhaustion of caring for him. The strain was mostly on her, though. Despite loving his son, Jamie left her to perform most of the motherly and wifely chores. She held down a job while his financial ventures were on shaky ground, and the family --- no I finished this book in a little over 24 hours. I couldn't put it down. It is beautifully written and Kate Swenson does an amazing job making you feel less alone.