Kate Swenson, the creator of Finding Cooper's Voice [1], and her husband, Jamie, knew that their son Cooper was developmentally delayed before they received the official word that Cooper had nonverbal autism [2] on a piece of paper when he was 3 years old. Kate felt in her gut something was different about her son [3] from the very beginning.
"We knew long before the words were said out loud," she told POPSUGAR. "Cooper never slept. He was never content. He didn't know how to play or interact. He had no words. None. His only activity was watching Barney the Dinosaur and Thomas the Tank Engine."
Although Kate and Jamie were totally supportive of their son's diagnosis, it wasn't an easy adjustment. "We left with a slip of paper and an answer," she said. "And in a second, every single thing was different. My son had a label. He was different. And so was our family."
Kate explained how some days are better than others in an emotional Facebook post [5] that any parent can relate to.
"Because in reality, my son is closer to 2 years old. He doesn't do things a 7-year-old does. Seeing them hurts. It still takes my breath away."
There's nothing I love more on this earth than my son. And I like to believe that Jamie and I are past the grieving that goes into having a disabled child. I truly do. We have two beautiful children. Wonderful lives. We are blessed and happy. I want you to know we are in a good place. We truly are. But each of us has triggers. You know? The thing that brings that dull ache to your stomach. It's almost impossible to describe to the outside world.
She said she finds herself the most upset when she starts comparing Cooper's development level with that of other kids:
"It's seeing typical boys who are the exact same age as my son. Watching them play, speak, move around, interact," she said. "Because in reality, my son is closer to 2 years old. He doesn't do things a 7-year-old does. Seeing them hurts. It still takes my breath away. And just when I think I'm past it, I'll see my friend's son growing up. I'll have a conversation with him. I'll see his future. I'll experience the shoulds, coulds, woulds, and almosts."
And while she admits that some days are definitely better than others with Cooper, she's never exactly sure when those bad days are going to come:
Grief is not linear, my friends. You are going to have highs and lows. The severe parts of my son's autism are getting more evident. His sheer size alone is a lot. I still grieve sometimes. Just when I think we are settling into a routine or have a win, a new behavior will develop. Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies.
Rather than dwelling on her struggles, Kate decided to spend her free time raising awareness for autism.
"Raising a child with special needs is incredibly isolating. I don't just mean the physical side, either, the struggle to leave the house and go places. Yes, that is a big part of it. But the emotional side is even more isolating."
All that aside, she made it clear that she loves Cooper and his 4-year-old brother, Sawyer, more than anything: "We definitely have ups and downs but it's important for the world to know that my son is my son. He isn't my 'autistic' son," she explained. "Our life is unique to most but it's the only life we know with him. And he is loved and treasured."
