Posts Tagged ‘this too shall pass’
A Letter to My Little Brother About Love, Autism, and Understanding
A letter to my little brother… Hey brother, I’m hoping that someday I can say this all to you. But there is a chance that I might never be able to…I’m hoping that when you are older you will read this and understand. I know my autism confuses you sometimes. I’m so loud. I flap my arms. I don’t notice toys. Or play sports. Or like to leave our house. I don’t play like you. I have never ridden a bike like you, and I don’t care at all about…
Read MoreThe Dignity in Every Job: Rethinking What Success Means for Our Kids
I’ve been sharing about autism for nearly ten years now. And over the years, I’ve read and heard and seen some things that have broken me. It’s par for the course I guess when you share publicly. These days though, I am more seasoned. I’ve learned to sit with comments for a bit before I respond. I try to listen and learn. I try to educate. I’m not perfect. But I try to do good in this world. The other day I read a comment that made me feel icky…
Read MoreDriving Through Life with My Nonverbal Son: Love, Growth, and Big Plans
My sweet boy, We just got back from a car ride. We do that sometimes. You and me. We used to ride around to help you calm down. A much needed break for both of us to reset. Now we drive around and hunt for trains. Not a lot has changed over the years except now you are fourteen. And you can buckle your own seatbelt. A skill we worked on for years. A skill that you are incredibly proud of. You even check to make sure mine is buckled…
Read MoreThere Is Always Next Year: A Journey of Hope and Progress
There is always next year…At age two we went to a restaurant for the last time. We started early intervention and learned how different our son was from his peers.At age three he was diagnosed with severe nonverbal autism, and we were told all the things he would never do.At age four we locked our house down. Three locks on every single door. Window alarms. Fences. We realized we couldn’t go places outside of our home. We started having aggressions and self injuring behavior. At age five it got really…
Read MoreA Family Full of Love: Why We Had More Kids, Not Replacements
Someone once told me that my husband and I had a third and fourth children as replacements for our oldest son. See the little one on the left there with the mischievous smile? And the little princess in the yellow dress? Those two. I assume they wrote that comment to hurt me. Or to remind me what a crappy mom I am. Or maybe they were just angry and miserable. Who knows I guess. What a ridiculous statement though. A replacement child. I’m not sure why we would ever replace…
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 MoreA Friendship Beyond Words: The Love Story That Truly Matters
What is love? Or even a love story? I guess we all know the traditional one. The stereotypical one.But I know a better one.A friendship.My son Cooper is 14 years old. He is what they call…nonspeaking. See, at three years old they told me he had autism. And then around age six the professionals told me he would most likely never speak. And somewhere along that way, a daycare provider told me he would never make a friend. I’ll never forget it. It’s one of those moments who made me…
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 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 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…
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