meeting went well

Meeting this morning went very well. Emphasis on 'we don't have the TVI Lars needs & no real hopes of getting one.' Set up an interim schedule- OT & PT only, Tuesdays, Wednesdays, & Thursdays. Left open possibility of circle/classroom time Tuesday mornings before OT.

Packets mailed to collaborative & Perkins today. Official collaborative visit 9:30 Friday morning. Principal & team leader know the likelihood of us choosing that program is about 0%; trying to get as much 'pre-admission' paperwork done at Perkins as we can this week.

*boing* *boing* *bounce* *bounce* happy mama happy

Marlborough wrap-up meeting tomorrow

Out of town Wednesday night through yesterday evening at the regional music therapy conference in Newport. Andey & boys joined me Friday & Saturday. I basically bounced around like tigger all of Wednesday after we found out Marlborough said "uncle." Popped champagne with Lisa & John Wednesday night & with Carylbeth, Michele & Laurie Thursday night. Highly important to acknowledge the best news we've had in three years.

Joa had a great weekend, relishing in his brother's good fortune & his moms' energy & joy. He co-MC'd the traditional conference cabaret in his white tuxedo, with tails. Stunningly handsome. Lars has been up & down: bad day Friday, then high-maintenance interspersed with pain Saturday & this morning. By this afternoon he was pain-free & charming again. Lars was so miserable upon arrival in Newport Friday it took him nearly an hour to calm enough to recognize I was there with him.

Tomorrow is wrap-up meeting with Marlborough schools wherein they approve Lars' referral to an outside placement. I believe they have to send packets to different schools & we may have to go observe several as a formality. They already called Perkins last week: "if we should have to make a referral on Monday, would you have space for a three-year-old?" We have a message detailing what they'll need from us, and we hope to get the process rolling quickly. No idea how long transportation will take to arrange.

When I think about the reality of it, I'm truly so excited I can hardly contain myself. Such a dramatic turn-around. Three weeks ago I kept thinking, "No matter what I do, it seems I can't keep him comfortable/out of pain-free & I can't get him the right educational placement." It was devastating. Now we're down to an occasional bad day (even a bad day now isn't as bad as it was) & the best educational placement we could hope for. It's downright thrilling.

My take on the combination of factors that turned the school tide:
-no TVI
-saw him in person & how he didn't fit their classroom; witnessed pain & fussiness
-having observed Lars in the classroom, we could give many specific examples of how & why its not the right place
-the applesauce story
-no TVI
-Suzie calling principal after we felt slimed by team leader
-above call led to meeting with principal & team leader together wherein principal was warm & easy to talk with & listened & understood & showed her true mensch colors
-overall civility of our approach & our advocate's too
-no TVI
-keeping my"'I've-worked-in-special-ed-for-a-number-of-years" and my 'I'm-in-the-TVI-program-@-UMass" cards in my pocket until last week's meeting, and then playing them
-no TVI
-advocate then calling principal the morning after the meeting & saying she's recommending to us that we go to hearing if the team doesn't come to consensus that an outside placement is in his best interest
-no TVI

WE DID IT!!!!!!!!!!! PERKINS, HERE WE COME!!!!!!!

Just got the best news of the millennium: Marlborough is sending Lars to the Perkins Preschool!!

I couldn't be happier!!!!!!!!!!!!!!

cautious optimism

Lars is feeling great, and has been for most of several days. A few bad times here & there, but in general excellent. He was so charming tonight it was almost intolerable. Such a beautiful thing.

Also seems we may have a chance to get him into Perkins. All fingers crossed for 10:00 a.m. Monday morning, when we have our "reconciliation" meeting with the team to deal with the rejected portions of the IEP...

quick update

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.

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:

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.

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.