Kate Swenson is a mother of two and blogger who shares her experience raising a son with severe, non-verbal autism. Her honest advice and reflections on motherhood remind us that "it takes a village."
Tell us about yourself.
My name is Kate and I am the mama to two wild and crazy boys, Sawyer (age 4) and Cooper (age 6). Cooper has severe, non-verbal autism. As you can imagine raising a child with a disability has impacted my life in every way possible. While I do work full time as a Digital Project Manager for PBS, my career has been impacted significantly. Autism has many demands and probably should have a mom who is a full-time case manager. But, I need to work…for financial reasons and also my sanity. I’d love to say that I am a well-balanced human with a wide variety of hobbies….but, at this stage in life my focus is mostly raising my sweet boys and creating the best possible life for Cooper. I love to write and share our story at www.FindingCoopersVoice.com as well a variety of outdoor activities.
What was the journey of Cooper's autism diagnosis?
I always begin my response to this question long before Cooper was born. Before Cooper’s dad and I got married we attended a required pre-marital counseling session. That was a little over 9 years ago and I can still remember specific questions that were asked. How would you handle a partner with an addiction? Or a partner that lies? Gambles? As a couple we were asked to speak to each other openly and honestly about different issues. The final question was, "how would the two of you handle having a special needs child?" I remember we were crabby. The class was 8 hours long. We wanted to be done and go on living our blissfully perfect life. I think we scribbled down on the paper….we’d love that baby just like any other baby. We were both good people. Huge hearts. Typical people. That was that. The class was done. Then we were married. Careers were started. And babies were born. And suddenly we were teetering on the edge of having a child with autism. Little did I know the foreshadowing that question was providing.
Our journey to getting an autism diagnosis for Cooper was very, very challenging. We lived in rural Minnesota and I joke that we had the first ever baby with autism. I would spend my nights researching, joining mommy groups, and reading blogs. I was making myself crazy and putting a ridiculous amount of stress on myself and marriage. I knew in my heart something was wrong with my baby but no one believed me. Not family, friends or even our pediatrician. After a whirlwind of misdiagnoses we were finally told the words that we desperately needed to hear but also dreaded…Autism. We were given a promise of help if we could move our family to a new city in less than a month. The decision was simple. We sold our house and moved. Since then Cooper has improved by leaps and bounds. At age 6, we are in a good place. We are figuring it out as a family with Cooper’s care at the center of our focus.
What is the relationship between Sawyer and Cooper like, and what are your hopes for their relationship in the future?
At ages 4 and 6, my boys have very little interaction. They are together all the time in the same home but very rarely notice each other. Cooper is happy in his own little world with his Kindle and trains. Sawyer is very much a social butterfly. At times the two boys will wrestle and interact in a physical way, but ultimately they always end up getting hurt.
The future is unknown to me. I want Sawyer to love his brother and accept him. I worry that he will see his brother as a burden and that he will have animosity over all the things we can’t do because of autism. I also pray that having a brother with a disability teaches Sawyer kindness, patience, and understanding.
What led you to create your blog, Finding Cooper's Voice?
Raising a child with special needs is incredibly isolating. And I don’t just mean the physical side…the struggle to leave the house and go places. Yes, that’s a big part of it. But the emotional side is even more isolating. When Cooper was younger I had very few people that understood what I was going through. I pulled away from my friends and family because our journeys were so unbelievably different. And I don’t blame them for that. I blame myself. My life was different. Heck, it still is. I am potty training at age 6. I live in a state of constant chaos and sleep deprivation. My days involve social workers and IEP’s. Blogging was a way for me to put my very normal feelings of isolation out into the world and find the other moms, dads and caregivers that understood. And in doing that I built a village of support around my son. It was the best decision I ever made.
As a vocal autism advocate, what are the less-spoken challenges that you see a lot of parents and families facing?
There is an element of grief that goes into raising a child with special needs. That statement offends some people while parents of kiddos with needs are nodding their heads. I was pregnant just like my friends. I pictured the future and raising my sweet little baby. Never once did I factor in having a child with severe needs. I pictured baseball games, funny conversations and bike riding — not doctor’s offices, IEP’s and communication devices. His diagnosis was shocking to me. I felt the need to grieve the little boy that I had pictured in order to accept the life I was given. My advice to parents is to give yourself time to accept your child’s diagnosis. You are human. Cut yourself some slack. And then you will be able to love the child that you have in an even stronger way.
And not to mention the time, money and hope that goes into constantly trying new therapies. Find what works for your child and your family. Maybe that is trying new therapies often and maybe it is sticking with what works. Trust your gut.
What advice do you have for other parents raising a child on the autism spectrum?
Build a village around your child. I fought this at first. When you child is diagnosed on the spectrum you will feel like your world is out of control. Suddenly you have a label. You are part of a group. You are in the autism club. The school and county have questions. Add in doctors and therapies and friends and nosey neighbors and suddenly your world no longer feels like your own. I joke that every teacher in my son’s school district knows about my vaginal birth. I didn’t like it. But eventually I found a team of therapists and social workers that were the right balance for our family. Having a support system is huge.
Continue to challenge your child. Any autism parent knows that we walk a fine line of encouraging our kiddos to try new things and letting them live in their comfort zone. Continue to challenge them. Don’t ever give up hope. At age 6, we are still working on potty training every single day. I refuse to give up hope that it will happen.
Take time for yourself. I know that is easier said than done. I get it. Remember though, there is no break from Autism. So you need to replenish yourself so you can be the best parent possible.