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…
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,…
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…
A while back we visited an arcade. It was a big adventure for our family of six. Our second son loves all things gaming. And our 3 and 6 year olds love tagging after their older brother. And Cooper, our eldest son, he is just starting to take in the world outside of our home. He loves exploring and experiencing the world on his own terms. He is fourteen years old. He loves trains and postcards with animals on them. He also has autism. He is autistic. And according to…
A Thank You Letter to My Kids, the “Typical” Siblings I know having a sibling with special needs has not been easy on any of you. Autism is like a kaleidoscope. While it certainly brings a lot of color to our life, each piece is different from the rest. Every twist gives a different view, and the effect is different for everyone. Autism has not only altered your sister’s life but the lives of all of us who love her and walk beside her. It is overlooked how much the…
My son Cooper has always reached for a hand to hold when we are in the community. But not just any hand. Typically only mom or dad. He likes the comfort of us walking alongside him. Usually we lead. Or we walk side-by-side. And as he’s gotten older, he’s even started to lead more. But he’s always only an arms length away. We are his safe spot. His translator. His buffer. His armor. We help him decipher. We explain. We protect. We walk. We often refer to him as a…
‘Dad! Is everything alright?’ That’s what I said when ‘Dad Cell’ flashed on my phone. I half expected it to be someone else. A relative. A nurse. Someone telling me something happened. My stomach felt sick as I waited the few seconds for a voice to respond. ‘Katie. Did you catch the game today?’ I gasped. See my dad hasn’t called me in a really long time. He used to call me weekly and then he had a stroke and it changed him. It changed the way he walks and…
This morning I was running around getting four kids ready to leave the house, even earlier than usual. We had a sensory friendly showing of Moana 2 to attend. Cooper was the most excited. He’s been counting down the days for weeks. See his two best friends we’re going too. Up and dressed and ready to go and saying…’DDD-EEE-X-TER’ every time I walked by. It was a bit chaotic to say the least. Packing a bag, a special snack and drink for Cooper, headphones, hats, coats, and gloves (it’s 4…
Hope. Gosh I hear that word a lot. Have hope. Never give up hope. All we can do is hope. If we give up hope, than what do we have left. In the world of autism, hope is a hot topic. Because for some reason, people question if I’m hoping for the right things. Hope and I have had a rocky relationship over the last few years. For years I hoped nothing was wrong with my baby. Then I hoped my toddler would catch up. And then I hoped that…
Progress over Perfection.That’s a phrase I think about a lot. In the most challenging years of our son’s life, post autism diagnosis, it felt like we were frozen in time.Or moving backwards even. But never forward.Our son was in pain, but we didn’t know why or what. He didn’t sleep or communicate. He hurt himself and us. He rarely smiled.For years it seemed like he wasn’t made for this big, confusing world. And to top it off, the world didn’t seem to want him either.But we didn’t give up on…
