Last week, we were on a Disney Cruise/Disney World trip. Max loved Mickey, Minnie, Goofy and the Disney gang (princesses included!). He had a blast at the Kids Club on the boat. He adored the monorail. He enjoyed the safari at Animal Kingdom. He went on the Speedway race track at the Magic Kingdom too…
Category Archives: Cerebral Palsy
Which personality traits get you through?
We’re away on a Disney adventure as you read this, first a mini cruise, then a few days at the park. Last time we were at Disney World, two years ago, Max refused to go on any rides except the race-car track in the Magic Kingdom. He was terrified of everything else. Even “It’s A…
Stuff I can’t believe I’ve said to doctors
“OK, I know he’s got microcephaly, but don’t you think all that hair hides it well?” “I’m sorry, I’m not convinced you know what you are talking about.” “The other day he grabbed one of my nipples while he was breastfeeding, I thought it was a good sign he’s going to be able to use…
Didn’t your mama tell you that staring is rude?
I’m at a birthday party with Max at a friend’s home. It’s really crowded and Max is darting around, uneasily. I’m trotting behind him in case he loses it but keeping a safe distance because I don’t want to baby him. As I follow Max, I notice a few moms staring at him as he…
How do you stop your kids from wigging out?
Sunday night, we went out to dinner with friends. We tried a local hamburger joint we’d never been to before. I was worried about how Max would deal. He does OK in familiar restaurants, but as I’ve mentioned he gets unnerved in new places. We got there. Max tried to run out. We decided to…
Adventures in PDA
So, here’s the thing about my little boy, Max: He doesn’t yet get social boundaries. Like, he doesn’t understand that you’re not supposed to go up to people and pat their shirts if you think their shirts are a nice color (purple, his current obsession). It also became clear to me recently that he has…
A rant: Must everything be related to our kids’ special needs?
Max’s school physical therapist left a voicemail last Tuesday on my cellphone saying that he seemed sluggish, not like himself and a little uncoordinated. I’m not good about checking my cell voicemails, and so I didn’t even know she’d phoned till I got an email on Friday from his occupational therapist recapping that he had…
Giving in to your child’s special needs
The scene: McDonald’s. My husband just picked me up from the airport (I went to the Blissdom conference in Nashville), and we’re eager to down lunch. We walk in, and Max makes a beeline for a corner table he likes to sit at. Max has this thing about tables at restaurants: At the handful of…
And yet more special needs Mommy confessions
• I have moments of absolutely insane worry that include things like, “If terrorists blow up our state, where am I going to get seizure medication?” • I sneak omega-3 oil into Max’s Wheatina and wheat germ into his chocolate pudding and when he looks suspicious I make it like everything is OK. • I cannot…
How do you handle those “when?” moments?
I’m having one of those days when the “whens” are on my mind. By that I mean: When is Max going to regularly use both his hands? When is he going to pick up more words? When is Max going to toilet train? When will he feed himself more regularly? When will he dress himself?…