Posts Tagged ‘autism family’
The Aftermath of an Autism Dignosis
“Mommy, wake up. I love you,” I hear Rhys’s raspy little voice say into the darkness as he holds my face in his hands. It’s before 6am and that champagne from last night is now wreaking havoc on my head. But I open my eyes and pop up to greet Rhys, fueled by this new milestone we’ve reached: saying “I love you.” Both proactively and in the appropriate context. Sure, as parents we all get melty when our children say “I love you.” But when Rhys says it, it’s magic.…
Read MoreDiagnosis Day
I know you are hurting. I know you are worried. I know your whole body is trembling, and clammy with sweat. I know, because I once heard the very words you heard today. Yes, it is Autism Spectrum Disorder. I heard them fifteen years ago, when I was a New Autism Mama. Now, I am an Old Autism Mama. Take a deep breath. Just breathe. It is a diagnosis, that’s all. Yes, it is life-changing. Yes, it is official, and important. It is also momentum, and possibility, and a chance…
Read MoreThe Shore
Being a special needs parent sometimes feels like being dropped in the middle of a turbulent ocean while a storm rages on. My family and I have been thrown in and are desperately trying to make it to shore. The shore is the promised land. It’s what we’ve always dreamed of. We should have never fallen into the ocean, we weren’t prepared for this. I don’t even know how to swim. Surely this must be some sort of mistake. But I keep telling myself that once we get to the…
Read MoreBoth of My Children Are Normal
“Is your daughter normal?” the nurse asked. “So far she’s developing typically,” I replied, The conversation moved on but I couldn’t shake the word “normal.” The word swirled around my head and gave me a sinking feeling in the pit of my stomach. Normal. Compared to what? I looked down at Everett, my autistic two year old, watching Daniel Tiger on his kindle , wondering if he’d heard and then wondering if he understood. If he did, how did it make him feel? As a physician assistant, and medically speaking,…
Read MoreI’m Ready For Forever
This morning I thought about forever…as we woke up before the sun and hurried to get ready to go find trains. This is what we do. When you first find out you’re going to become a parent you think about raising a child, sending them off to college and watching them get married to start a family of their own. I’m not saying he won’t ever do any of these things, but I’m also saying we aren’t promised he will either. The day you find out you’re not just a…
Read MoreLove Needs No Words
Here is my blue-eyed, blonde hair, sweet boy looking at me. He shows his love through his eyes. He may be unable to tell me he loves me verbally, but he shows me in his unique way. Thinking back three years ago, life was a lot different. It was the start of our autism journey. It was the start that our life would change forever. He was not making any form of eye contact. He would not interact with peers. He would always want to be left alone. It was…
Read MoreThe Autism Dad
I’d like to talk about The Autism Dad for a moment. You’ve probably come across him once or twice. It’s not always obvious at first. He’s the guy attempting a smile while his son screams. He is the man who holds his teenager’s hand as they walk down the street, oblivious to the stares. He is the father whose vision of coaching Little League and relaxing on Sunday afternoons sprawled in front of the football game have been replaced by sessions of Applied Behavior Analysis, and speech therapy. This…
Read MoreI Didn’t Have the Capacity For a Confrontation
Right after we moved into our current home, I registered to attend several open houses for homeschool co-ops and tutorials in this area. I will never, for as long as I live, forget one specific open house. As one of the teachers shared her plans for the fall semester, she referenced the potential number of students in her classroom based on the current number of interested families. “We have seven students…” she began. That number didn’t include Milo. I’d attended the open house with a friend who also had a son with special needs. That number didn’t include her child, either. Another teacher…
Read MoreHey You
Psst, hey. Look at me, I’m over here. Come close. I want to tell you something. You won’t win today. To be honest, I haven’t really noticed you in a while. I almost forgot about you. It seemed like the medicine was working and my son Jack was calmer and a little less agitated. Then, just last month, you returned with a vengeance—all ragged cuticles and sleepless nights. Anxiety. You would think I’d be used to you by now—that I could anticipate your next move, and figure out a solution,…
Read MoreChanging the Narrative
The other day I interviewed Joe of Joe James Autistic Awareness & Photography, an autism self advocate and all around cool guy. Each time I chat with him I spend days after reflecting on the wisdom and advice he provides me with. In our most recent interview, at least a dozen time he said, ‘I am autistic and proud.’ And at one point he said, ‘can you imagine if every autistic person said that? How the narrative of disability would change?’ Wow. Think about that for a minute. Right now,…
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