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

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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? Whether you are a parent, friend, family member, or professional who wants to learn more and understand both the internal and external challenges of raising a child with autism….Forever Boy has something for everyone! 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. Kate: Yep, Winnie is now. She is almost 10 months old. Yeah. And she's our fourth and our only girl and such a blessing to our family. She's just a joy.

Stepping off the path that every other child follows is crushing, and one of the hardest steps you’ll ever take as a special-needs parent.Everything about this book exactly describes my life. I have the husband with the nerves and patience of a saint while I am spiraling out of control, trying my hardest to just hang on and make it through each day. Kate and her son Cooper are an amazing example of a great unconditional love between a mother and her child. 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.

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. 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—watching her boy play at baseball games, walking him down the aisle. She hadn’t signed up for life as a mother raising a child with a disability.

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Forever Boy is my life. In reading Katee's words, parts of my life replayed through my head. Both of my kids are on the autism spectrum, and they are both at different ends. What works for one of my kids doesn't at all work for the other one. My son is mellow and independent, but my daughter is incredibly needy and demanding. My son is happy to sit playing video games or playing on his tablet all day. But my daughter constantly jumps from activity to activity, and will burn the house down if you dare to take your eyes off of her for more than a second. My son is fully verbal, but my daughter ... She is no longer non-verbal, but she still has some really tough moments where she struggles to speak and express herself. There are behaviors, anxieties, and aggressions, really tough moments when I feel like a complete failure, and some really fun moments of pride and joy. 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. 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.

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. 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. 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. 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. 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.

Her memoir describes her emotions and feelings on the diagnosis process to the disappointment and huge levity that was placed on her discovering her child would have special needs. With her popular blog, Finding Cooper's Voice , Kate Swenson has provided hope and comfort for hundreds of thousands of parents of children with Autism. Now, Kate shares her inspiring story in this powerful memoir about motherhood and unconditional love 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. 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. Mary: Yeah, yeah. OK. So the big thing that has happened was one of the big things is you wrote a book that is coming out. This episode 170 is going to be aired for the first time on April 5th, which is the launch date for Forever Boy. When? Why? How did you decide to write a book?