One is that I'm not always quite comfortable about how we're doing. One thing that all the specialists, therapists, social workers and everyone else involved in Aidan's complicated life consistently ask is:
Health Care Professional (usually to him): How is school going?Then we go on to the kidney or the GI tract or the neurological system or the hypertonic left leg, whatever that particular specialist is concerned with, but you can see how all possible aspects of Homeschool Inadequacy have been covered. He doesn't even know what grade he is in! He is not really progressing! He can't carry on an ordinary conversation! For that matter, neither can his mom!
Aidan (thoughtfully): Good (that's what he says to every question asked by a health care professional that starts with "how")
HCP: "What grade are you in?"
Aidan: (answers vary): "I'm in highschool this year " "I don't know."
HCP: "What are you learning?"
(The conversation usually dies there, and I step in)
Medical Mom: "He's homeschooled." (You can see where Aidan gets his talent for being laconic).
HCP: "OH so MOM's your teacher! (So Mom, how's he doing?)"
Medical Mom: "Well, he functions like a 1st grader" (I've been saying this for about 3 years -- originally that was a generous overstatement, now it's about right with some bizarre scatters both downwards and upwards). "He's learning to read, etc."
But this is SO FAR from representing what our life is really like.
Sometimes I feel like I need a new language just to talk about Aidan. The old language isn't adequate. Maybe Aidan has the right idea with these conversations and I should follow his lead.
"Aidan is learning everything there is to know about our two coolers and our two cars and the wheels on the old stroller he wanted us to buy when he was already eight simply because he was fascinated with stroller wheels. He asks me to google "stroller wheel coloring pages"! He also wants me to google "TAC chapel" and "Chevrolet Astro Van" and "battle tops" and "ambulances". He takes pictures with my cell phone of things like the red-accented ceiling fans at the Meat Market and the trinitarian hanging lights at the church we attend occasionally in town. He takes three of the cardboard rolls that toilet paper come on and designs his own "St Anthony lights" as he calls them. He twirls almost everything he gets his hands on, or spins it if he can't twirl it. It's surprising how many things can be twirled or spinned and in general, how much physical potential of objects most of us never consider.
He memorized all the Latin prayers in the Rosary when he was about 9 because we were saying the Latin rosary daily during one Lent. He has memorized most of our little-kid books as well but he can't answer questions about story sequence or what the characters are feeling or any of that.
He makes up poetic words and phrases that somehow capture something about an event or sight that no one else would even notice. He called our cat "The Bobice". He tries to grab my glasses when I'm reading, as a joke, always saying the same thing in a rhythmic chant, "You must have spoken of us to read the glasses!"
He will sit for an hour patiently arranging his magnet letters in alphabetical order and he also regularly sits down with a Word doc and types out the alphabet with each letter a different color. He can spell words like giant and hippo and queen but not words like cat and bag. He helps me in the kitchen,and anticipates what I will need next before I even figure it out myself. He can lug a huge wheelbarrow full of firewood in spite of his disability, and in fact he can spend an hour outside with me lugging wheelbarrows of firewood that weigh more than he does.
He dictates stories about coolers to me and then reads them back, and that is how he has learned to read a little. Now he is doing addition by counting on the abacus while playing online addition games. He knew all the numbers up to 100 and could put them in order a long time before he could count objects up to 10 with any kind of accuracy.
Aidan's curriculum is poetic, indirect, repetitive, hands-on, full of laughter and jokes, bounded and expanded by his intense affections for very specific things, and I don't know where it will go. Like most mothers of delayed children with significant issues, I worry about his function out in the "real world" someday, but I hope his enthusiasm for hard work, his habit of watching and imitating, his laughter and joyfulness, and even his occasional spirited outburst "STOP IT SEAN!!" when his older brother teases him too much will serve him in good stead.
You can see why I need a new language. It's easy for me to talk K12-speak, and fortunately that type of learning meshes well with Paddy's talents, but those words simply don't express what Aidan's life is like.
By the way, Aidan loves doing jigsaw puzzles either in real life or online, and we found this site where you can upload your choice of pictures -- stroller wheels, econoline vans, coolers, whatever -- and tailor the complexity to whatever level you want.
Aidan wanted a puzzle of the TAC chapel under construction, so here it is!
2825572944 174716a Jigsaw Puzzle