Posts Tagged ‘caregiver’
We Used to Dread Haircuts
Progress. That is what this photo shows. Night and day progress. Years ago, taking this photo would not have been possible. Instead, I would be standing right next to Lucas and his Dad on the other side. I couldn’t take him alone. That would be a disaster. His hair would be so long it would become unmanageable. Washing it was too hard, so we’d have to make the dreaded appointment. I’d wear the least amount of clothing possible. Why? Because my body temperature would rise in an instant. My face…
Read MoreThe Journey We Didn’t Expect
We sat in this room the night before you arrived. We were scared, terrified, really. I got a call that morning saying the state of Louisiana had a little 3-year-old boy who was nonverbal in the foster care system. Do you want this placement, Mrs. Marler? She asked! I instantly said YES!! I called my husband immediately, telling him the good news. He was so excited until the moment I said this little three-year-old boy is nonverbal and might have autism. The phone went silent. My husband and I both…
Read MoreTo the Mom of the Toddler That Won’t
To the mom of the toddler that won’t sit still at mom and me music class. To the mom of the toddler that won’t interact with other kids at Gymboree. To the mom that is chasing her toddler around Gymboree while the other moms are standing chatting pushing their kids on the swings. I just want to say I see you. I was you. I was the mom that sat in her car after buckling her boy in his car seat, wearing sunglasses trying not to let her boy see…
Read MoreI Have Some Big Dreams for My Autistic Son
Just look at him sitting there, Sweatpants, t-shirt, in his comfy chair. His hair is too long, one hand on a juice box, and the other playing with Buzz Lightyear’s cat Sox. He doesn’t know what’s going on in my head. All these thoughts run around while I lay in bed. I have some BIG, BIG, DREAMS! Help him learn to communicate. Bring him on lots of play dates! I have some BIG, BIG DREAMS! Help him make friends, who knows where this story will end. Plan big adventures all…
Read MoreI Blamed Myself for His Autism
Last night I laid in a full-size bed, inside a tent, under a train blanket, with my eight year old son. He had just fallen asleep. Beforehand, we talked, sang, and laughed. He asked me to hug him tight, and I did as he fell asleep. Slowly releasing him before he completely drifted off. Tight hugs are one of the few things that help him calm his body. Sleep doesn’t come easy for my boy. You can judge and give suggestions, but we’ve tried it all. My son is autistic…
Read MoreAutism Never Crossed Our Minds
Our son Sullivan is autistic and has Attention Deficit Hyperactive Disorder, Oppositional Defiant Disorder and Sensory Processing Disorder. Many people ask us, when did you know your son was autistic? That’s a tricky question because initially we had no idea. Sully had what we know now as sensory issues early on. We had to try many different bottle nipples, he threw up a lot, he stuffed food in his mouth till he choked, he would eat and eat and not like the feeling in his stomach and make himself throw…
Read MoreThank You to the Waitress Who Understood Inclusion
We tried a thing today. It was one of our spur of the moment ideas. My autistic son, Xavier, had gotten up at four again, and to be honest, after we dropped off his younger brother at school, we were all hungry and in need of a caffeine fix. Xavier’s Occupational Therapy appointment had been canceled due to a training his therapist was attending, so we had over an hour to kill. There is a diner that my husband and I both love, and hadn’t been to in a couple…
Read MoreLet’s Teach the World
My son, I want to tell you about the beginning. The beginning of autism. And a bit of the middle I suppose. I used to get so upset when people stared at you. You’d be flapping. Or making happy noises. Screeches. Grunts. High pitched screams. One second you’d be on the floor and the next running only to drop to the ground, roll, laugh and pat the ground. Or you’d be melting down. Screaming. Either way it almost sounds the same. Loud. I’d look around. Make eye contact. Sometimes I’d…
Read MoreHe Taught Me How to Truly Listen
A few days ago I was driving myself and my four kids home from my mom’s house in Wisconsin. We had just celebrated Christmas and my SUV was packed to the brim with toys, leftovers, and love. The sky was dark as I navigated the backroads I’ve driven home for 30-some years. I remember being a little girl and dozing as my parent’s car bounced over the same bumpy roads. Only this time I was the parent, and I had three sleeping kids in the seat behind me, and one…
Read MoreHis Interests Stay the Same
As we age, our interests change. They evolve. They grow with us. But what if they don’t? What if they stay the same year after year? In the real world, they call it age appropriate. It means teenagers shouldn’t be watching Barney or adults shouldn’t be believing in Santa. Someone once told me to turn off the cartoons and put on the National Geographic channel. I still laugh about that. They thought parents like me should be forcing interests. My son is 12. He’s amazing. And he loves Peppa, Barney,…
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