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How to Advocate for Your Child: A Parent’s Letter to the IEP Team
It is time to prepare for my daughter Olivia’s annual IEP meeting. I need to go over all of her goal updates and the data taken so we can move forward in the best way for her individual needs. Here is a letter I wrote that conveys all the things about Olivia to her team. To the education staff working with my child, Olivia is a very complex person. She was diagnosed with autism and sensory processing disorder. She also has anxiety and will become obsessive-compulsive in certain situations. I…
Read MoreWhy Time and Love Matter: Sibling Connection and Autism
Last night after putting my four kids to bed, I found myself staring at this picture from across my living room. Cooper was 8. Sawyer was 6. And my third was just a few days old. The perfect photo of three brothers. Except, it wasn’t perfect. Not in anyway. Cooper refused to touch the baby. He was very scared of him. The baby had been home 7 days at that point and Cooper had yet to really even acknowledge him. He refused to lie down when the photographer asked. He…
Read MoreDancing in the Rain: The Truth About ‘This Too Shall Pass’ for Special Needs Parents
There is a saying that is said at one time or another to every parent. This too shall pass. I remember being told those words as I held each of my newborns, exhausted from cluster feeding and lack of sleep. Again during the never ending messes that kids make. During potty training woes and tantrums over blue cups and the wrong shoes. And I guess in most cases it’s true right? The hard moments do pass. Usually. Babies start sleeping. Messes stop. Little humans learn to communicate. Kids get more…
Read MoreA Year of Purpose: Finding Joy and Strength as a Lifelong Caregiver
I recently marked one year since I took early retirement from my career to stay home with my son, Zachary who lives with severe autism. I have always worked full-time throughout his life, but once we realized he would always require 24/7 care, our goal was for me to care for Zachary full-time after he graduated high school. As a senior, he started saying, “Stay home, Mama,” every morning, so we knew he had the same goal. It took us about three years after he graduated to meet that goal.…
Read MoreTwo Brothers, One Game: A Special Moment 14 Years in the Making
This picture. The older brother watching the younger brother play goalie. Probably seems like nothing special. But it is. It’s hugely special. It’s a diagnosis of autism for the older one. The younger one learning alongside him. It’s years of hard work and practice. It’s deep breaths and waiting patiently. It’s noise and sound and cold. It’s also a family, all together, watching a hockey game. I don’t know a lot about autism. I am no expert. I can’t tell you the mysteries of my son for sure. Nor can…
Read MoreFinding Faith Through Autism: A Mother’s Journey of Prayer
I just came from church. I went alone today. I could have brought my two younger children but honestly, I needed 60 minutes to myself to sit and think. I chuckle at what I consider to be a ‘relaxing break’ now. Anyhow I don’t often talk about church on this page. Because like politics and vaccinating and puzzle pieces and the color blue, it can anger people. And that isn’t what my mission is about. I refuse to argue about autism. Not anymore. I’m too busy making sure my son…
Read MoreUnlocking My Son’s World: The Joy of Texts from My Nonverbal Teen
I have a story to share with you. A little long possibly, but worth the read. My son Cooper is 14 years old. He has a diagnosis of nonverbal/nonspeaking autism. He loves trains and swimming and asks me every single day to go to outer space with his friends, the Little Einsteins.He is in 8th grade. He communicates in a variety of ways. Some words and sounds. Gestures. A speech device. Sign language. Typing. And most recently a cell phone.He’s never quiet. He loves to take photographs. When he’s feeling…
Read MoreAutism, DIPG, and the Unbreakable Bond of Siblings
An autism diagnosis for my son, Jackson, nearly nine years ago. A brain cancer diagnosis of DIPG for my daughter, Monroe, just weeks ago……. I panicked in the small emergency room nurses break room when it happened. No, I want to just take her home. Let’s pretend this never happened. This can’t be happening. It isn’t true, she’s only seven. I needed a moment to say all the things that weren’t helpful before I could process the diagnosis that was being handed to me in a suitcase with a weight…
Read MoreHappy Birthday, Sawyer!
Today is my son Sawyer’s 12th birthday. Which is a really big deal. Because according to him he’s basically 16. I am a storyteller. At least I consider myself one. I think our stories are what complete us. And telling stories about Sawyer are my favorite. And I write them down so one day, when I am old and grey, we will have them to look at. This is my favorite Sawyer story… We had arrived at Cooper’s school to pick him up for the day. It was Jamie, Sawyer,…
Read MoreUnmasking Autism: A Mother’s Love Letter
My son, I used to be so scared of different. Of standing out. I preferred to blend in. Not rock the boat as they say. But you kid. You changed all that. You were born to stand out. To be different. When you were little I’d get so scared. The fear would almost paralyze me. In a way you were fearless because you didn’t care what people thought. And I’ll admit, that frightened me. We’d be in a waiting room or at a park. Everyone else would be sitting. Or…
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