Mama Bear
03-21-2009, 05:22 PM
I've been frantically busy and have rarely made it to the boards over the past few months, so I'll start with info/background.
I'm flying solo with 5. My eldest is bright and reads a ton, has OT for ADHD/Aspie-esque features adn math tutoring because he learns best when he's one on one (focusing). My second is the "cruise director" -- organizing everyone and everything, she's bright but sometimes (often?) resistant to following through with school (about average in this, I'm guessing). My third is a bit behind in her reading, finds math easy and fascinating, loves English, is a trooper. My fourth, also a trooper, loves everything about school, is about 6mos-1 yr ahead in her curriculum, generally hard-working and fearless. My littlest guy (deep breath) has apraxia/dyspraxia, dysphagia, CP type issues, perhaps seizures (time for another EEG), Cortical Visual Impairment and Intermittent Exotropia, Reactive Airway Disease (NEBs when he gets sick), does not sit or stand for more than a few seconds at a time, will soon have a walker/gait trainer, planning on a feeding chair (pureed diet, no g-tube), and getting ready to potty train (gulp) at three. The big kids play piano and violin, little guy loves music but tolerates minimal actual violin practice (four at a time is LOUD). Little guy has one hour of Speech, one hour of OT, two hours of PT every week. He's eligible for SpEd preschool here, but I haven't visited the classroom yet because I'm trying to fly under the radar of flu and misc bugs (weight loss and neuro symptoms result). I have met the therapy team with the SD and they're great, but he's eligible for only about an hour and 20 minutes total per week.
So that's pretty much life here. Crazy busy, as you'd imagine, but rewarding and moving right along. Mostly. :D Last Tuesday, an evaluation with a new Speech Path person to address needs for Assistive/Augmentative communication equipment revealed that he's identifying colors with near 100% accuracy and chooses A's and B's correctly when offered two letters to pick from (we ran out of time to do any more). He loves the 10-15 min/wk he gets on the computer during OT and has made great progress with head switches and a touch screen. He tracks moving objects well and is obviously very involved/invested in stories/games/songs (color matching, following directions).
So. I'm a little surprised by all this, but have thought that he's getting ready for reading, just by little things that are familiar to me from my other kids: loves stories, turns pages (closed fist, mostly), tries to lurch at the TV when his sisters watch Word World, seems to be paying a different kind of attn to ABC books/dvds. I've been thinking for awhile about how to teach a kid who can't just *tell* me what he knows. I've assumed that I'll be reading a TON to him (his sibs will too) and that the minimum for him will be yearly completion of the "What Your _____-er Should Know" series. But watching this, what he did for a complete stranger (family/familiar therapists usually get more out of him), I'm thinking he may need more as time wears on.
I've been thinking about that preschool class because I'd love to have a few hours/week with a clearer focus for the bigger kids who are getting ready to write mondo papers, do algebra, and generally take on thigns that require some chunking of my time. The younger girls can still do school in 1.5-3 hours/day and that kind of time isn't too difficult to come up with. I'm not really considering putting anyone in school (except maybe preschool), though I evaluate that option a few times/yr in my head. :D
The details w/ preschool can be worked out for sure, but... (whispering) I'm tired. The house is too often a wreck. We live with my darling parents, whom we love to death, but parenting under the watchful gaze of one's own parents can be, um, challenging. The house is full and the exciting new equipment will stuff it further toward the gills. The current support amt. does not allow me to move into anything other than a very small two bed apartment with stairs (would not accomodate little guy's chair or our backs). I love the things we're doing (almost all of them), but it adds up to a LOT to do, you know?
I need some help, I think. Little guy can take up to three hours a day for food prep and feeding. He needs working with too, because as much as he gets into certain dvds/PBS programs, he ought not veg. He's not ambulatory (yet) and can't reorganize himself into new activities when he's bored. I have a call in to the agency that's supposed to evaluate and provide personal care hours. He has major sleep issues (went down at three one night this week) which are an artifact of his neuro diagnosis and will not be going away. He takes meds for this and probably always will, so that might equal some respite care time, but the funding is sparse and shrinking.
Maybe I'm just in the place where I'm too tired to think my way out of this?
We'll be going for a nice walk later, and I'm hoping it'll help clear my head. Any thoughts are much appreciated.
I'm flying solo with 5. My eldest is bright and reads a ton, has OT for ADHD/Aspie-esque features adn math tutoring because he learns best when he's one on one (focusing). My second is the "cruise director" -- organizing everyone and everything, she's bright but sometimes (often?) resistant to following through with school (about average in this, I'm guessing). My third is a bit behind in her reading, finds math easy and fascinating, loves English, is a trooper. My fourth, also a trooper, loves everything about school, is about 6mos-1 yr ahead in her curriculum, generally hard-working and fearless. My littlest guy (deep breath) has apraxia/dyspraxia, dysphagia, CP type issues, perhaps seizures (time for another EEG), Cortical Visual Impairment and Intermittent Exotropia, Reactive Airway Disease (NEBs when he gets sick), does not sit or stand for more than a few seconds at a time, will soon have a walker/gait trainer, planning on a feeding chair (pureed diet, no g-tube), and getting ready to potty train (gulp) at three. The big kids play piano and violin, little guy loves music but tolerates minimal actual violin practice (four at a time is LOUD). Little guy has one hour of Speech, one hour of OT, two hours of PT every week. He's eligible for SpEd preschool here, but I haven't visited the classroom yet because I'm trying to fly under the radar of flu and misc bugs (weight loss and neuro symptoms result). I have met the therapy team with the SD and they're great, but he's eligible for only about an hour and 20 minutes total per week.
So that's pretty much life here. Crazy busy, as you'd imagine, but rewarding and moving right along. Mostly. :D Last Tuesday, an evaluation with a new Speech Path person to address needs for Assistive/Augmentative communication equipment revealed that he's identifying colors with near 100% accuracy and chooses A's and B's correctly when offered two letters to pick from (we ran out of time to do any more). He loves the 10-15 min/wk he gets on the computer during OT and has made great progress with head switches and a touch screen. He tracks moving objects well and is obviously very involved/invested in stories/games/songs (color matching, following directions).
So. I'm a little surprised by all this, but have thought that he's getting ready for reading, just by little things that are familiar to me from my other kids: loves stories, turns pages (closed fist, mostly), tries to lurch at the TV when his sisters watch Word World, seems to be paying a different kind of attn to ABC books/dvds. I've been thinking for awhile about how to teach a kid who can't just *tell* me what he knows. I've assumed that I'll be reading a TON to him (his sibs will too) and that the minimum for him will be yearly completion of the "What Your _____-er Should Know" series. But watching this, what he did for a complete stranger (family/familiar therapists usually get more out of him), I'm thinking he may need more as time wears on.
I've been thinking about that preschool class because I'd love to have a few hours/week with a clearer focus for the bigger kids who are getting ready to write mondo papers, do algebra, and generally take on thigns that require some chunking of my time. The younger girls can still do school in 1.5-3 hours/day and that kind of time isn't too difficult to come up with. I'm not really considering putting anyone in school (except maybe preschool), though I evaluate that option a few times/yr in my head. :D
The details w/ preschool can be worked out for sure, but... (whispering) I'm tired. The house is too often a wreck. We live with my darling parents, whom we love to death, but parenting under the watchful gaze of one's own parents can be, um, challenging. The house is full and the exciting new equipment will stuff it further toward the gills. The current support amt. does not allow me to move into anything other than a very small two bed apartment with stairs (would not accomodate little guy's chair or our backs). I love the things we're doing (almost all of them), but it adds up to a LOT to do, you know?
I need some help, I think. Little guy can take up to three hours a day for food prep and feeding. He needs working with too, because as much as he gets into certain dvds/PBS programs, he ought not veg. He's not ambulatory (yet) and can't reorganize himself into new activities when he's bored. I have a call in to the agency that's supposed to evaluate and provide personal care hours. He has major sleep issues (went down at three one night this week) which are an artifact of his neuro diagnosis and will not be going away. He takes meds for this and probably always will, so that might equal some respite care time, but the funding is sparse and shrinking.
Maybe I'm just in the place where I'm too tired to think my way out of this?
We'll be going for a nice walk later, and I'm hoping it'll help clear my head. Any thoughts are much appreciated.