Posts Tagged ‘nonverbal autism’
I’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…
Read MoreNot the Life I Pictured
Some kids go to hockey practice and baseball games. Or theater or an art show. Play dates and birthday parties. That’s what a parent imagines. Cooper and I used to have nothing like that. No outings. No games. Oh how I longed for something. Anything. A place that we could go to together. Now we go to speech together. We go to grocery stores and Target too. We visit places in our community. We visit parking lots just to learn about cars and strangers and practice waving. We always seem to…
Read MoreI Wonder About the End
I wonder about the end. The end of autism. And I don’t like that thing (of me) that creeps up through the night as I think. Staring into that corner by the closet where it sits. No matter how I try the thought it crawls on me. “When are you going to stop hiding? To stop running from me?” It whispers. “You know the truth: that Autism will only ever end when you accept it. When you invite it in.” At the beginning I’d always end up in front of…
Read MoreI had Plans for us Kid
I had plans as a mother. Big plans. Plans that I can admit didn’t include autism. Even today, after 8 years, sometimes I still find myself wondering how my plans got so derailed. How we got here. I’ll be giving my son a bath, washing his feet, and I’ll look up at him eating bubbles, throwing his head back, smiling, squealing, and I’ll wonder how this happened. Or he’ll be having a meltdown, self injuring, and screaming over turning left, a walk to the park or a crinkle in his…
Read MoreShow your Kids the World
When we bought a house in a neighborhood full of kids I told my husband we are either making the biggest mistake ever…or we are going to change Cooper’s life. At the time, Cooper paid no attention to kids. He hated noise and chaos. He didn’t like a full house. Overnight Sawyer made friends. In and out they came. So many kids Cooper’s age. Older and younger. Our living room and kitchen full of little voices asking for snacks. By the end of day one we found Cooper in the…
Read MoreSpecial Needs Parenting Changes Us Entirely
Special needs parenting changes us entirely. There is no denying that. Because the truth is — the first few years are going to pull you so far away from who you used to be that you won’t even recognize yourself anymore. You’ll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you’ve aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible.…
Read MoreYou Can Feel Sad and Love Simultaneously
You can feel sad about your child’s diagnosis and still love them with every fiber of your being. If you do, I want you to know that you’re not alone in your feelings. It doesn’t make you a bad parent. You may feel powerless, frustrated, and depressed. I know I’ve felt all this and more. I’d kept these feelings to myself for a while because I was ashamed. I was afraid to admit them. I love my son Charlie, so the sadness that engulfed me was confusing. For a long…
Read More