Posts Tagged ‘special needs family’
I’ll Follow His Lead
“I think we can say with confidence that Leo meets all of the criteria for Autism Spectrum Disorder…” I sat on the floor of the room where Leo was being assessed, absorbing the doctor’s words…reaching with confusion for the tissue box she set out before me, only to realize that my cheeks were stained with tears silently streaming down my face. I knew before those words were uttered…before she handed me that piece of paper with his newly minted medical diagnosis… I knew. And yet, despite leaving for our appointment…
Read MoreAcccepting Our Color
This happy boy just visited his most favorite place on earth. Besides home of course. The train museum. He worked all week to come here. Three good days at school and voila here we are. He happily looked at the trains. He anxiously looked at the magazines hoping they’d have ones he likes. This train conductor has no time for Model Railroader. He picked out 7 postcards and a DVD. He wore his mask. He pushed a button to make Thomas go around the track. And then it was time…
Read MoreAn Early Winter
There is just something Cooper loves about the first snowfall of the year. He gasps. He points. He giggles while dad shovels. He watches intently. He even seems to count the flakes as they fall. When we go outside, he laughs when the flakes hit his head and hands. I promise you before the day is over we will dance in the snow at least once to the songs in his head. I’d tell you he loves sneaking a taste but one of you will tell me about the tragic…
Read MoreH-O-M-E
Cooper has been living his best life and getting spoiled at his grandparents for a few nights. Three sleeps to be exact. I FaceTimed a dozen times but talking on the phone isn’t his jam. He’s a man of few words. On day one and two he didn’t think twice about his brothers and parents. He was too busy. But on day three, he started asking for m-o-m and h-o-m-e. I guess every five minutes around the clock according to grandma. When he got home today he gave me the…
Read MoreBecoming the Mom I Silently Judged
There’s a story I’ve been wanting to tell for awhile, but it’s hidden in shame. The shame is a silent one, as most are. We often hide our dark thoughts because shining a light on them would mean shining a light on all the things we silently do or say or think that reminds us that as humans we are flawed. That’s the thing about shame, in our minds it outweighs our goodness. Even when the scales tip in favor of our goodness, the bricks of judgement and self righteousness…
Read MoreAre You Aware?
Autism awareness needs to change. People need to understand what awareness is all about. It’s NOT looking at a kid who has autism and treating them like they’re neurotypical. It’s NOT saying, “oh, I’m sure that’s hard for any kid” when a parent says what they’re struggling with. You seeing my daughter’s autism and ignoring it is NOT awareness and acceptance. Be aware of the differences. Be aware of the struggles. We know you see the meltdowns and the rigid routine. We know you see that she’s not quite like…
Read MoreThe 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 MoreWishing On Stars
I’m trying not to obsess over signs that my daughter, Evie, is on the way to finding her own words. Not scripting, echoing or repeating; I mean her own feelings, her own thoughts, expressed in her own words. She’ll be five in November, and despite being a chatter box of sorts, she’s considered nonverbal. She isn’t able to communicate verbally outside of our home, with people who don’t know her like we do. Evie told me she loved me the month before last. Can you imagine my shock? Part of…
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