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.

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. 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. Kate Swenson joined me for the second time on the Turn Autism Around podcast. You can find her first interview in episode 70. Kate is a mother of 4, and her first son, Cooper was diagnosed with autism a few months before his 4th birthday. She has created an amazing platform through her blog Finding Cooper’s Voice and her paid Facebook group of which I am a member, Coop’s Troops. I realized in that moment it takes a strong person to have a child in special education. There are no bells and no whistles. This was his first year in kindergarten and I wanted to celebrate it, but it felt like the public education system was telling me it wasn’t going to be special. It was going to be sad and dark. But the special education families, our stuff is always during the workday. Every meeting for an individualized education program or IEP, every conference, they are always during the week at a time that is difficult for any working parent.

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. 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 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.

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. 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.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.

Forever Boy is a candid journey through the beauty and battles of having a child with autism. Kate blends wit and wisdom in an unapologetic account of marriage, motherhood and unconditional love. She captures the struggles, expectations and reality all parents face while advocating for their children. It's a story of unexpected loss; enduring hope and most importantly, newfound understanding. It should be mandatory reading for teachers or for anyone who has children or is thinking of having children.” – Colin Balfe, founder of Love What Matters 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.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. 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.

After Kate and Jamie happily tied the knot, they first had to deal with a miscarriage. Though discouraged, they were pleased when Kate became pregnant again and gave birth --- with some stresses --- to their new son. Cooper’s early days were difficult; he rarely slept, certainly not on any sort of schedule, and cried often. Eventually the cries turned into screams. There was no sign of his comprehension of environments or events, or any urge to say the simplest words. 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. Mary: Right, right? Because, you know, there was a lot of time between my first book and my second book and I'm not really sure, either. But yeah, I can appreciate that. OK, so last question. I always end this way, and before I ask it and answer it, you gave me a piece of advice for this last question that I use every single day. Oh, it's one of my favorite answers, but I'm going to ask it. I'm not going to tell you what your previous answer was on podcast 70. So here's the question: part of my podcast goals are for parents and professionals to be less stressed and lead happier lives, not just to help the kids, but for themselves. So do you have any self-care tips or stress reduction tips that you can share? Mary: Yeah. And you know, all of my listeners know that the spectrum of autism is very wide, and you have described Cooper on the more severe end of the spectrum. And so. Grief. It comes out of nowhere. I don’t think it ever goes away. It couldn’t possibly. But grief is love. Grief is help. Grief is acceptance. And I will carry the weight of grief with me forever.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