Very short on time, so this will be brief. Lars has visited the preschool Friday & yesterday with us. We met with team leader & principal yesterday. Basically good meeting. Very strange. Principal apologized for not having TVI, acknowledged not having program in place for Lars. The door was finally opened, at the table, that this program may not be the right one for Lars.
We are supposed to schedule a resolution meeting for next week, although our advocate will be out of town until after April vacation. Appointment scheduled with lawyer next Friday, April 6th.
In the mean time, Lars is going to the preschool for his therapies, and perhaps for a little time visiting the classroom, and some more time getting to know his aide after the children are gone.
Principal floated the idea of Lars attending the collaborative in town until his program is in place at the preschool. Hm. Don't know what to think about that. Phone date with advocate tonight.
Tuesday, March 27, 2007
Sunday, March 25, 2007
When Lars chewed open all 3 of his g-tube ports,
and emptied stomach contents all over himself & the hammock swing, Andey & I just said, "Of course that had to happen, to round out this evening." Before that we had poop up the back, down the leg, on Andey & the rocker & the floor & the bed. And we had water coming in the Fourth (4th) place in our "dry" basement.
I'm trying to get a letter ready for our meeting with the Marlborough school people tomorrow morning, and grade many many papers, and listen to many many student recordings, and prepare a presentation for a conference this coming weekend.
Turning school stuff over & over in my mind...thinking about the whole situation, many comments from friends, what we're going to say tomorrow.
Plan of action is tomorrow we meet with two bureaucrats to "talk about the IEP." Then we request a meeting directly with the sped director. Depending on the outcome of those two meetings, we likely file a formal complaint with DOE Program Quality Assurance because the district is out of compliance not having a TVI for Lars. Later tonight I'll post a draft of the letter on the ed blog.
Bringing Lars at the beginning of school tomorrow, but he won't be in the class without at least one of us (or a TVI). We'll bring him with us to the IEP meeting. Wish our advocate could come, but too short notice; she's busy.
Thrilled with the music therapist they've hired (Kathleen); will feel fine about the 1:1 aide after she gets training in how to deal with multiply impaired blind toddler; underwhelmed with the classroom teacher & OT; and downright concerned about speech & PT.
Lars has been feeling pretty good. Loves his new massage mat that he received from friends for his birthday. It was his buddy Suzie's birthday yesterday, so I put Deborah Henson Conant's birthday song on, and he did a birthday breakdance in her honor:
I'm trying to get a letter ready for our meeting with the Marlborough school people tomorrow morning, and grade many many papers, and listen to many many student recordings, and prepare a presentation for a conference this coming weekend.
Turning school stuff over & over in my mind...thinking about the whole situation, many comments from friends, what we're going to say tomorrow.
Plan of action is tomorrow we meet with two bureaucrats to "talk about the IEP." Then we request a meeting directly with the sped director. Depending on the outcome of those two meetings, we likely file a formal complaint with DOE Program Quality Assurance because the district is out of compliance not having a TVI for Lars. Later tonight I'll post a draft of the letter on the ed blog.
Bringing Lars at the beginning of school tomorrow, but he won't be in the class without at least one of us (or a TVI). We'll bring him with us to the IEP meeting. Wish our advocate could come, but too short notice; she's busy.
Thrilled with the music therapist they've hired (Kathleen); will feel fine about the 1:1 aide after she gets training in how to deal with multiply impaired blind toddler; underwhelmed with the classroom teacher & OT; and downright concerned about speech & PT.
Lars has been feeling pretty good. Loves his new massage mat that he received from friends for his birthday. It was his buddy Suzie's birthday yesterday, so I put Deborah Henson Conant's birthday song on, and he did a birthday breakdance in her honor:
Saturday, March 24, 2007
night post
I can't seem to stop crying. Lars sometimes joins me, but tonight he's better at going back to sleep than I am. Perhaps expressing some of it will lift enough that I can sleep. This has been such a long journey, and we only have the very beginning of a story.
Who Lars is, with all his strengths & limitations, has never been difficult for me to accept. He doesn't need to be able to do anything in particular to be "okay" to me. He may or may not stand, walk, talk, cut his food, whatever.
At the same time, I have felt passionately that both my boys be in settings that superbly support their growth and development into who they are. Witness our 3,000 mile move so the as-yet-unconceived-Joa could attend Sudbury Valley School. I can't seem to shake the feeling that the class they're trying to shove Lars into is just entirely wrong for him. His response to being there with kids yesterday was essentially what I feared it might be. He lasted fifteen or twenty minutes, then waged protest, then shut down by going to sleep.
I'm in a place of deep mourning right now. I shall hold to my warrior & my optimist & my realist & my grounded self & my dreamer, but I need to feel all the sadness now.
Who Lars is, with all his strengths & limitations, has never been difficult for me to accept. He doesn't need to be able to do anything in particular to be "okay" to me. He may or may not stand, walk, talk, cut his food, whatever.
At the same time, I have felt passionately that both my boys be in settings that superbly support their growth and development into who they are. Witness our 3,000 mile move so the as-yet-unconceived-Joa could attend Sudbury Valley School. I can't seem to shake the feeling that the class they're trying to shove Lars into is just entirely wrong for him. His response to being there with kids yesterday was essentially what I feared it might be. He lasted fifteen or twenty minutes, then waged protest, then shut down by going to sleep.
I'm in a place of deep mourning right now. I shall hold to my warrior & my optimist & my realist & my grounded self & my dreamer, but I need to feel all the sadness now.
Thursday, March 22, 2007
painful day, but not for Lars
Lars had a great day. I didn't.
It was incredibly painful for me to sign "I accept the placement" on Lars' IEP this morning. I tried to find some place in me convinced this is an appropriate placement. Wasn't able to do that, so the process was of signing that I accept what I know to be wrong for my son.
I didn't think I had the time or space to deal with my feelings, as I was getting ready for work, but my body laughed at me: "Oh yeah?" said she. "You want to try to pretend that wasn't painful? I'll show you how painful that was."
By the middle of the day I was lying on the floor at work with a blanket & pillow kindly brought in by my supervisor, shades drawn, trying just to get through the worst of the migraine. A colleague drove me home & I went to bed all afternoon. Still now some pain, feel hung over, but can at least tolerate low light & low noise, & focus my eyes.
Who am I to think that might not have happened?
Next visit to the school, with kids this time, is tomorrow morning at 9:00. We'll both be there with Lars.
Fabulous photos Denise took @ Lar's b-day party are now posted below on the party blog entry . So sweet.
It was incredibly painful for me to sign "I accept the placement" on Lars' IEP this morning. I tried to find some place in me convinced this is an appropriate placement. Wasn't able to do that, so the process was of signing that I accept what I know to be wrong for my son.
I didn't think I had the time or space to deal with my feelings, as I was getting ready for work, but my body laughed at me: "Oh yeah?" said she. "You want to try to pretend that wasn't painful? I'll show you how painful that was."
By the middle of the day I was lying on the floor at work with a blanket & pillow kindly brought in by my supervisor, shades drawn, trying just to get through the worst of the migraine. A colleague drove me home & I went to bed all afternoon. Still now some pain, feel hung over, but can at least tolerate low light & low noise, & focus my eyes.
Who am I to think that might not have happened?
Next visit to the school, with kids this time, is tomorrow morning at 9:00. We'll both be there with Lars.
Fabulous photos Denise took @ Lar's b-day party are now posted below on the party blog entry . So sweet.
well...
Larsman had a great day yesterday. Both of us got fantastic haircuts from our one-&-only Donna (Changing Faces in Natick). Has his first medical acupuncture appointment this morning @ 10 with an acupuncturist/MD Andey & I know from ten years ago when we worked @ the Center for Holistic Pediatric Education & Research @ children's. Came out here from Stanford to work with the pain service & stayed. Fantastic guy & insurance coverage.
Andey & Lars go visit town school today, after kids leave. I'll be at work. Don't know what's happening come Monday with no TVI.
I feel physically really awful. One of the worst headaches I've ever had. Comes with nausea & sensitivity to light & sound. Think I really need to go to work anyway, for a variety of reasons. Am I nuts?
Andey & Lars go visit town school today, after kids leave. I'll be at work. Don't know what's happening come Monday with no TVI.
I feel physically really awful. One of the worst headaches I've ever had. Comes with nausea & sensitivity to light & sound. Think I really need to go to work anyway, for a variety of reasons. Am I nuts?
Wednesday, March 21, 2007
school update
Crazy stuff happening with school, which is supposed to start Monday. No TVI (teacher of students with visual impairments) in place, town implying it's our fault. Not.
He's not starting there without a TVI. They really really don't have a program for him without a TVI.
Feeling confused & slimed. Wrote more on lkeducation.blogspot.com You have to sign in with a google account to read that blog. If you want to be added as reader or author, just let me know.
He's not starting there without a TVI. They really really don't have a program for him without a TVI.
Feeling confused & slimed. Wrote more on lkeducation.blogspot.com You have to sign in with a google account to read that blog. If you want to be added as reader or author, just let me know.
Tuesday, March 20, 2007
graduation day
It's Lars' last day at Perkins Infant-Toddler Tuesday group. Graduation day.
Many mixed feelings.
Many mixed feelings.
Sunday, March 18, 2007
what a great party
We had a fantastic birthday party, thanks to Lisa, Griffin, Julia, Margaret, Mary-Carla, Roch, Isabelle, Katherine, Denise, Kali, Alice, Danny, Hanna, Garth, Henry, Nell, Cindy, Donna, Gabriella, Michelle, Aubrey, Tamara, Gannon, Carylbeth, Erika, & Molly. (Hope I remembered everyone...) Others, too, who wrote & sent birthday wishes, wanted to come. Thank you all so very much. Major gratitude to Denise for the gorgeous photos.
During the party, Lars hung out with lots of different people & mostly did great- a little fussy at times, but quick recoveries. He was completely charming all evening after people left, eating a lot & singing. This morning & early afternoon he took a well-timed long nap in the hammock swing while we cleaned the house, cleared snow & ice, & frosted the cake.
Since Thursday Lars' days have been mostly happy & playful, but with terrible nights. Tonight will be my fourth consecutive & I'm tired & numb. Last night we "slept" for five hours, and during that time he woke up 19 times crying, requiring intervention. At one point he was up for a couple hours. Hoping it's just the cold he's had.. Tired is why I haven't written. Keep falling asleep with laptop on lap.
Like now. I'd better hit "publish" & go to bed.
Here are two photos from Lars' actual birth day, March 8th 2004.
These are from long ago when I was keeping kynvi.com up. Haven't figured out how to transfer it to Mac, so it died with our PC...
These are from long ago when I was keeping kynvi.com up. Haven't figured out how to transfer it to Mac, so it died with our PC...
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