Posts Tagged ‘autism’
My 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 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.…
Read MoreUnderstanding Social Norms
This afternoon I took Cooper and my baby for a walk. If you have followed me for a while then you know that my son is thriving. It’s obvious in my posts. I like to say we are all settling into autism. Me. My husband. Sawyer. And Cooper. Our whole family. We are all learning. We have calmed down. We rarely get shocked anymore. And Cooper is doing so great. We have started venturing out into our community. Daily. We keep trying. Pushing. But I never, ever take my boys…
Read MoreI have a Date with my Boy
I have a date tonight. At 4:30. Right after school. We are going to go train hunting. Me and my boy. He has a ticket. Well, actually it’s a piece of paper that I wrote on this morning. But to him, it’s a ticket. A reminder. Something he can hold onto. And treasure. Something he can show his teachers. And keep with him all day. I am going to pick him. I am going to bring snacks and drinks. I know he will burst out the doors smiling. Running. My…
Read MoreThe Greatest Teacher
It was a beautiful, sunny April day last year when Autism first became a part of our lives. It was in the last few days of Autism Awareness Month that we were presented with my son Jack’s suspected diagnosis of Autism and we would begin our journey on the spectrum. His diagnosis would be confirmed a month later at an appointment with our developmental pediatrician- a last minute appointment we were lucky to get almost seven months early due to a cancellation and our ability to be there with short…
Read MoreIt’s Different Than What I Pictured
When I pictured my son at age 8, I thought it would be full of sports. Throwing baseballs. Riding bikes. I thought we’d be building with Legos. And playing PIG at the neighborhood basketball court. I pictured play dates. And never ending birthday parties. I thought we’d be arguing over math homework. And trying to get you to wash your face. And of course conversations about Minecraft. I thought you’d be so popular. And that your life would be so busy I’d be praying for time to slow down. I…
Read MoreSilence and Chaos
April is Autism Awareness Month. If you’re in my circle, I imagine you’re pretty aware of autism. We live and breathe autism. My son Michael has always been loud. He’s always made his presence known. He’s larger than life. I dare you not to smile when he signs “more tickles, please”. As anyone who has ever met him will tell you, it is impossible not to fall in love with him. I know as his mom, I’m biased, but he’s the cutest 3 year old in existence. The thing that…
Read MoreInclude Us, Too
When you talk about your children and how you are feeling relieved because they just met their milestone after all. When you talk about how, “easy” your new baby is and how great of a big sister their sibling is. When you gossip about so-and-so whose son might be delayed. When you talk about those things knowing that I have a disabled child… Right in front of me…. As if I do not exist… As if my child does not exist… You NEVER ask about her. None of you. When…
Read MoreChildhood is Not One Size Fits All
“Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding he’s exactly the person he is supposed to be. And if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.” -Joan Ryan I always knew I wanted children from a very young age. And for some reason, I always hoped I’d have a little boy. Well the universe heard my wishes and a little over four years ago we met our beautiful…
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