Sunday, July 25, 2010

Scenes from the brain of a special-needs parent


Love how sweet Max looks when he gets up, cheeks all flushed, eyes so big. Oh. Sigh. Bed is wet. I hope he can potty train, seven years is a long time to be wearing diapers. He goes at school, so I know he can do this. It's another one of those codependency things. Gotta talk with teacher. We’ve really got to figure out a better changing station than the top of his bureau, he’s getting a little heavy to lift although he’s still such a skinny kid. Need to talk with pediatrician about how to make sure he’s getting enough calories, or maybe we need to visit a nutritionist??? Just what we need, another expert in our lives. OK, he doesn't need me to carry him down the stairs, he can walk. OK, I'll carry him. Purple bowl. Purple bowl. Where is the purple bowl, only one he’ll eat out of? Ah. Found it. I'm going to sneak omega-3 oils into his cereal, he won't notice. Oh. He noticed. There you go, underestimating how with-it he is again. Maybe Dave can try feeding it to him, he’s really better at feeding than I am because he has infinite more amounts of patience. GOOD idea, Dave, distract him with iPad and YouTube videos of car washes, Max’s other obsession. Sure we'll end up at a car wash today. We have the cleanest car on the block. Good thing he doesn't ask us to take the neighbors' cars, too.


Wow, Max has changed so much, he just runs right in there, it used to scare him. Uh-oh, he’s grabbing a little girls’ purple bicycle. Gotta distract him. Jungle gym. There. Better. Not sure whether I want to smile back at that other mom giving me sympathetic smile, really hate those sympathetic smiles. Can't she just say hello? Or encourage her little boy to talk with Max? DO NOT open up your yap and tell her he is not an alien. It's that repressed anger flaring up again. Down, boy. Down. She means well. That kid who is blatantly staring at Max has got to stop, why is his mother not saying anything? Wish the drool would stop or that he would be more aware of it and wipe it away, it totally make him stand out, maybe we should reconsider that medication. But don't want to give him any more medication, the anti-seizure meds are plenty for this little body. Oh, good swings are practically empty. THANKYOUVERYMUCH, Meddling Mother, for informing me that these swings are for babies. Down, boy, down.


I really need to videotape us going through this. Maybe he'll be satisfied if I put up a video of it on YouTube. Or maybe we should bite the bullet and buy a booklet of 10 car washes. I think this obsession's going to last awhile. Wonder what his next one will be. Would be nice if he got obsessed with reading. Or sweeping. HA HA HA 


Dying for a tuna melt. Hope nobody’s sitting at the corner table Max loves. Oh. There’s an elderly guy there reading a newspaper. Favorite waitress has spotted us, and is talking with elderly guy. He smiles at us, and moves to another table. So kind of him, but maybe we are sending the wrong message to Max. I don’t want him to grow up thinking people are always going to accommodate him. Right now, though, I really just want a peaceful family dinner. And a tuna melt. They are so nice to Max here. It's like that old Cheers song about going to a place where everybody knows your name. So comforting. 


This boy sure does love his bath. Especially the part where he churns up a tsunami that cascades over the side of the tub. Think we need more caulking there. What is up with all the kicking in the tub? Gotta ask neurologist about that. When is our visit to the neurologist? Two months? Three? I need a secretary. Maybe we should start doing aquatic therapy again. He looks so cute in his towel. Uh-oh, it's getting late. Last time he had a seizure, it was after several nights in a row when he'd been up late. It is not a good idea to tell him he cannot sleep in our bed because it is "broken." He is no fool. Just be firm about him sleeping in his bed. Love that sweet grin he gives me when he crawls into bed. Careful to adjust the pillows. Is it crazy to worry that he's going to suffocate? I don't know. I mean, he's 7, but he sometimes gets stuck in a position. Just can't worry about it. Too much else to worry about. 


  1. Can so relate to nearly every.single.thought!

  2. Hi Ellen -- I loved this! Beautiful window into your world and very familiar.

  3. K Floortime Lite MamaJuly 27, 2010 at 8:24 AM

    how lovely is your writing

  4. I thought I was the only one churning out thoughts right on top of each other. Then I wonder why I can't remember where the "very safe place" was I put my brand new notebook so I would have it next time I take the kids to the doctor.

  5. OH this is all so familiar!!! I miss restaurants lingering thought at a restaurant was always "PLEASE, let no one within a 7 table radius have spaghetti".

  6. I love that the waitress and the elderly man cared about your son. Beautiful.