Posts Tagged ‘severe autism’
My Special Needs Truths
To the people that live outside of the special needs world. Here are my truths: Parenting is hard. So is special needs parenting. I’m allowed to say that both are hard at times. Talking about the realities of severe autism is not negative. It’s not pretty and wrapped up in a bow. It’s very real and raw. And until you live it, please be kind to those who do. I will be raising a child who needs lifelong care until the day I die. While other children leave the nest…
Read MoreThank You to the People Who See My Son
I want to thank the people who see my son. The people who ask how he is doing. Who on a Facetime say, ‘Let me see the boys. And Cooper too.’ Because while Sawyer and Harbor are demanding to talk and be seen, Cooper is not. Thank you to the people who wave to him on the street and say hi without needing a response. Who talk to him, even though they know he won’t answer back. Who aren’t afraid of his protesting at the park and instead ask him…
Read MoreThe Only Moments That Matter
This morning I saw a commercial. It was for some insurance company. Perfect family, house and kids. The oldest graduating from high school. The tag line something like…these are the moments we prepare for. The only moments that matter. I’ve been thinking about it all day. My mind keeps going back to it. The only moments that matter… First day of school. Graduation. A college acceptance letter. First job. A promotion, Marriage. Babies. Retirement. But what if a person doesn’t achieve those moments? Does their life not matter? My son…
Read MoreI Was So Scared of Different
I used to be so scared of different. Of standing out. I preferred to blend in. Not rock the boat. 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 paralyze me. We’d be in a waiting room or at a park. Everyone else would be sitting. Or playing quietly. You’d be flapping. Or making happy noises. Moving chairs. Eating sand. Twirling. Never sitting. Screeching. Grunting. Laughing at sounds or colors. You’d drop…
Read MoreWe Have Perfected Splitting Up
We were standing in a group of friends. Sawyer and I. Waiting in line with five other families. Dozens of kids. I watched him subconsciously glance around. Taking it all in. I wonder if he ever realizes that most of these kids, his friends, are his brother’s age. 8. They are talking about scary movies, Pokémon cards and mini doughnuts. As kids do. Part of me thinks he doesn’t even realize Cooper’s age. Probably because his favorites are Barney and First Word Books. I get it. He tugged on my…
Read MoreParents, Celebrate It All
There are many first in our children’s lives. Some we take note of and some we don’t. Most just happen without a second thought. It’s not like that in our world. My son has had to work hard for every single milestone. This is the first time I’ve seen my son independently play. He is working towards iPad time. He’s been at it for 15 minutes now. Sitting. Problem solving. Spelling. Puzzling. Trying. Babbling. There are no words to express how shocked and proud I am of him. How natural…
Read MoreI’m the Lucky One
I used to lie in bed at night trying to figure out if this will be all okay. Severe. Nonverbal. Autism. Anxiety. ADHD. Long term care. Guardianship. A whole lotta words. Scary words. Sometimes I wonder how one little 8 year old boy can have so many descriptors. What they really mean, when you add them all up, is that you will have challenges that you will have to overcome. But more importantly, they mean the world isn’t designed for you sweet boy. You will spend your whole life trying…
Read MoreBefore Autism
As my youngest baby’s first birthday approaches, I find myself thinking a lot about Cooper’s early years. He’s almost 9 now. If he went to public school he would be in third grade. A big boy. Double digits not far off. I look at this photo and I remember the desperation I had back then. The worry, fear and dread rolled into one fake smile plastered on my face. In a way my memories are starting to dull. The details not quite as sharp. The pain and worry not quite…
Read MoreThere is an Exhaustion in Forever
It’s 12:49 pm here. I just crawled into his bed and wrapped my arms tightly around him as he sleeps. A much needed nap. I feel his deep breaths go in and out against my chest. His course hair tickling my chin. The smell of syrup still on his cheeks, now covered in salt from crying. The smell of sweat. He is drenched. I let my breath out. The one I’ve been holding for over an hour now. We are home. Everyone is safe. We survived. On this beautiful Saturday…
Read MoreMy Son, You Have Always Been You
My son I have a confession to make. Back when you were little, I used to dream about a you without autism. I was lost, and sad. Worried and confused. And I thought that there was a you, deep inside, that didn’t have autism. I would search for him. I would think, once I find that you, this will be all better. I just have to try harder. I was going to do everything in my power to get to that you. The you who talked. Who played. Who made…
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