30 Reasons I’m Grateful I Get to Parent a Child with a Disability

* Because there’s a fierceness in my heart that wasn’t there before. * They’ve taught me what relentless love looks like. * They’ve introduced me to an amazing community of moms and dads who are tender fighters. * They rescued me from a pointless path to pursuing perfection. * They’ve taught me speed isn’t everything. * They’ve taught me to speak up. * Because they give the best hugs. * Through them, I’ve experienced what pure joy is. * They’ve shown me the value in being different. * Because of…

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Inside Her Head

Let me tell you something about an Autism Mama. Her brain never stops—not for one single second. All day long, it circles and loops and worries and wonders. It is a flow chart of appointments, and therapies, and specialists, and schedules. A veritable melting pot of hypothesis, and hope—optimism, and sorrow. It moves very, very quickly, this brain of hers. Like a bird alighting upon sunlit branches, it moves from one thought or idea to another. Dinner. The latest research about gluten-free diets. How to stop him from chewing his…

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What Happens When?

I spent an intense morning with my son Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke… This is life for special needs families. I made this appointment months ago…before Ryan had committed to his new surgery date in Feb…before when the original date was Jan 6 but then Luke was still in PICU and so we rearranged our…

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To My Special Son as You Approach Adulthood

I cannot believe how quickly the last seventeen years has flown by.   When I glance over at you, intently focused on the television screen with unshaven stubble presently on your face, I can vividly picture my adorable, chubby cheeked toddler.   I remember every minute of each therapy session you tolerated multiple days a week like it was yesterday – always working extremely hard to overcome significant motor delays, never giving up on hitting those many milestones, at your own pace.   Your ability to invent creative solutions for…

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Winter

Hi. My name is Carrie. I am a wife, a yogi, a writer, a book-reader, and a mother of five. I am also Special Needs Mama with a Special Needs Kiddo. His name is Jack. He is sixteen years old. When you have a Special Needs Kiddo, the weekend can feel very, very long. I know, I’m not supposed to admit this. I’m supposed to tell you all the fun things I create for my son and I to do together—interesting outings with built-in lessons, long hikes through the autumn…

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I’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…

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My Miracle Boy

On May 24th 2020 my entire world changed in a matter of moments. Since my son’s Autism diagnosis in February, I still had not said the words aloud, “my son has autism.” I would use phrases such as “he receives special services” or “he has special needs.” I had not gathered up enough strength to use the word Autism and Charlie with the same breath. I guess in my magical world the diagnosis wasn’t real until I said it was. I am honestly not sure how long I would have avoided…

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‘Very Nice Boy You Have Here’

Yesterday my son rode the bus for the first time to school. I was nervous. I thought about getting in my car and following but didn’t because I knew it would be great. When the bus pulled in the driveway after his school day I was waiting as the big doors opened. My first question…’how did he do?’ See, as a mom of a kid who has struggled in the past, and still does at times, I was ready. I’ve built up this armor you could say. Waiting for the…

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Sometimes You Just Do Not Need Words

My daughter does not speak as much as a three and half year old should.   She thinks a lot. She understands. She is very bright but she cannot express her feelings and experiences into words.  She has never said her belly hurts or that she is scared.  I have never heard about her day. She has never asked me why a sound of something is super loud, in fact she has never asked me a question about anything, not one single time.  The other day I picked her up…

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A Special Needs Mama

A special needs mamaIs weary in her soulDay after dayHas taken its toll Years of sleepless nightsMany thankless jobsThe constant demandsAnd heart wrenching sobs The daily needs grind herAlmost to the boneThe exhaustion, the diapers,all of the unknown A son she prayed forWho’s unruly and wildA son she prayed forWho’s misunderstood as a child But wipe her tears she mustAnd get on with the dayFor duty calls againDuty – without pay The phone calls, the letters,She’s desperate for a breakWhy don’t they help?She thinks, for goodness sake She’ll make them…

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