Posts by Kate Swenson
Topics We Don’t Talk About
I’ve been trying to find the words for a few days now. But coming up empty. I’ve been processing. Trying to understand, justify, explain and fix. But I haven’t been able to do any of those things yet. Instead I’ve felt sad. And ashamed. Worried. Confused. There are no child development books on this. We’ve entered a new stage of development. Hitting. It’s happened twice now. Fast. Quick. Out of the blue. His hands. My face. And I’ve quickly learned it’s a taboo subject. Parents don’t talk about it. We…
Read MoreA Letter to “Those Special Education Parents”
Dear “Those Special Education Parents”, You may know who you are and you may not. You’re the parents that previous teachers warn the following teacher about before transition IEP meetings or in emails about an upcoming move to a different school. Administrators are aware of you too and they attend meetings that you’ll be at, even if their attendance is not required. And why have you received the label of “those Special Education Parents?” Because you advocate for the services your child deserves. Earlier this year, I had an IEP…
Read MoreThe Issues that Divide Us
I have 2 teenage girl with autism. My oldest Claudia has very limited language and severe behaviors. She requires assistance with most everything. My youngest Keira is verbal and has social and behavior issues. Our life is not easy. Lately our family spends a lot of time divided. Claudia has a lot of verbal stims (saying same word repeatedly) and some of these can trigger a meltdown in Keira. When this happens (usually with little warning) my husband takes Claudia for a ride or to go swing. I generally spend…
Read MoreMy Message to the Moms who Admit It’s Hard
I think moms are amazing. My mom. Your mom. Moms of 1 kid. Moms of 5 kids. Moms of adult kids. Moms of babies. Working moms. Stay-at-home moms. Breastfeeding moms. Formula feeding moms. Moms of angel babies. And especially moms of kids with special needs. They are my moms. My people. I read something recently that said moms of kids with autism should quit whining. And complaining. That they signed up for ‘this’ when they got pregnant. Responses varied from anger to outrage to ‘walk a day in my shoes.’…
Read MoreMy Son was Born with Autism and it’s Genetic.
When I was eight months old, I had open heart surgery to repair my pulmonary valve that was only 2mm wide open. As a result, sometimes I have shortness of breath. I could possibly have another surgery in the future to replace the valve. Other than that I have no other medical conditions. Thirty years later my son Nicholas was diagnosed with autism and a rare genetic mutation within a week of each other just after he turned 3 years old. This is something he inherited from me, which also…
Read MoreA Harsh Reality
That moment when you realize your child’s diagnosis is far worse than you originally thought. It was almost as if I couldn’t catch my breath. Like someone was choking me. I cried as if someone had died. It sounds harsh, but trust me when I say that’s how it felt. I always knew my son Isaiah was special. From the moment he was born, I knew my boy was going to be somewhat different and not live a completely “normal” life. That was my Mom gut instinct. He was born…
Read MoreMy Promise to You
My son. My promise to you. I will do everything in my power to keep you safe. I will do everything I can to understand what you need. And why you act the way you do. I will defend your behavior. I will advocate for you. I will explain. Teach. And speak on your behalf when you need me too. And if there comes a day when you can speak for yourself, I will stand proudly behind you. I will be a buffer between you and the world. I will…
Read MoreIt’s More than Awareness
When I reflect about this month; April – Autism Awareness Month, what is it that I want most? I want ACCEPTANCE, ADVOCACY and ACTION! I want others to not just be aware of autism but to actually accept, make a difference, and make an impact in a life of some living with autism. When we talk about awareness, its a good start but it’s not something we should be satisfied with. It’s not until people understand, accept, and take action that we should say that progress has been made. So,…
Read MoreDiscovering Fragile X Syndrome
I feel like most of us could all tell similar tales of when we found out about our children’s diagnoses. Some of us were thrown for a loop, others were somewhat grateful to finally have answers, and some of us knew there was something there from day one. Maybe you were like me and were somewhere in the middle. There are some things I look back on from the day my oldest was born and remember thinking something seemed different, and then there were the thousands of times I told…
Read MoreA Simple Procedure
Dear Children’s Hospital, We just left your Saint Paul hospital. We visit you often. Not for super serious things thankfully. Ear tubes, Adenoids, Impaction, sedated blood draws, to name a few. We’ve been going to doctors for so long that at this point, I don’t know if my son is getting easier, we are getting stronger, or hospitals are finally starting to get it. Either way, today went well. Although I always like to say a huge success in our world is probably still an epic fail by typical standards.…
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