angels

Angels abound today, floating in & saving sanity, one moment at a time:

Lisa came, put Lars to sleep, cleaned the kitchen, got me a shower, got Joa out the door, and helped me think through Lars, my life, and everything;

Denise drove Framingham to Boston to Marlborough last night & again this morning to fetch meds for Lars from Children's hospital;

Tamara came & took Joa rollerblading, and then to her house to play with Gannon;

Jen brought a whole fresh & hot spinach lasagna, bread, warm oatmeal cookies, & a bottle of red wine;

Carylbeth is here now for the night so I might get some rest before teaching the last of my five Sunday intensive classes, and into tomorrow so Andey can sleep & work again tomorrow night.

It's a beautiful thing & I'm deeply touched & grateful again & again.

So many other angels I've forgotten to mention over the weeks, and those of you reading along, sending your good thoughts, or maybe the occasional email, stopping by & feeding/walking the dog, doing the dishes-- you're such beautiful people. Thank you so much.

tough day

For me, one of the longest days on record. Here & there some moments of quiet & peace when I work really hard to make all the stars line up just right & Lars can calm down & catch his breath. Biceps, back, neck, ears are throbbing. Nerves feel frayed, raw. Rope feels short. Tendency to pull back & disengage surfaces, scares me. Some moments are overwhelming.

I need to listen to the Blessing poem I recorded a couple months ago. Managed to give it to a few people on cd, but I just stuck it on podbean for anyone else who wants to listen.

Little man's really suffering. I joked about the "Central Irritability" diagnosis, but this sure fits the bill. Neurontin started today. Seems like all our eggs are in the neurontin basket 'cause all other baskets have been emptied & recycled.

Looks like we're going to have to start him at the Marlborough preschool, probably March 26th.

yes, bad day

Still screaming, although he's had moments of okay-ish-ness, and a nap mid-day.

So intense.

I have my earplugs in.

Docs finally agreed to try neurontin. If they had listened to Kind&Competent weeks ago when she said he should start it, we'd be on our way to understanding whether it's going to help. Now we have to wait another 3-4 weeks to find out.

No CVS in the area has it in the liquid form he needs, nor liquid oxycontin. They're waiting for us at CVS @ children's. Andey will probably go get it tonight.

more flood, more pain

Water's up to 4-5 inches. Plumber & sump pump on their way.

Pain & screaming continue, as does my headache.

At least I got Joa to school & the car to the shop. It's making terrible noises.

Sue is grocery shopping for us. Many thanks.

basement flood

Just discovered two plus inches of water in basement.

Lars still screaming bloody murder.

I think this is a bad day.

serious screaming

Lars is screaming and screaming and screaming. Violent screaming.

If we didn't have the g-tube, we'd be in the ER again, then inpatient...

God it's so hard. He's got valium & tylenol on board, but nothing seems to be touching it.

Lars update

Lars is doing okay these days. A little up & down, still a little sore at his g-tube site, but overall fairly okay. He is, however, having major screaming episodes in the middle of the night. They are very intense, and have happened the last two nights. Tuesday night was worse than last night. He screams like he's in terrible pain, and is relatively inconsolable for a period of time. Eventually falls back asleep.

He's also been fairly grumpy in the mornings, having a lot of nothing-is-right time. The rest of the day is going fairly well.

Long-awaited appointment this morning with pain service doc. Andey took him, as I was at work, so I'll get the scoop when we see each other this evening.

new blog for discussing Lars' education

I've started a new blog to have group discussions about education and placement and IEPs and all that fun stuff. I set it up so that only the people who are invited to can view it. Everyone who signs up for it becomes a co-author, and can create a post at any time.

I went very quickly through my email list & typed a bunch in. I'm sure I missed some people, and other people will find the computer-generated invitation to join probably landed in their spam folder. It'll say it's from "Mama Lisa."

Suffice it to say that you're all welcome! If you didn't get an invitation, please just let me know--via email is fine, lisa at kynvi dot com--and I will add you. I think you then have to click on a link in the email you receive to confirm joining.

I can't thank you all enough for the community we've all created for and with each other. Seems so what life is about, helping each other out as best we can. There are ways that the internet can really serve us well.

birthday concert, anyone?

Lars & his family have decided to attend a benefit concert on the night of his birthday, next Thursday, March 8th. Sounds like a good concert for a great cause. Anyone care to join us? Tickets are $10 and need to be reserved by contacting Roger Lussier at rlussier1@berklee.edu or calling 617.747.8677. There are no assigned seats.

Samite: Expanding Possibilities Through Music Therapy – Fundraising Concert

David Friend Recital Hall
Berklee College of Music
921 Boylston St. Boston, MA
Thursday, March 8, 2007 7:30 pm
$10 (Tickets must be reserved in advance)

Samite Mulondo makes truly joyous music, full of complex, swirling melodies and infectious rhythms. A master flute-player and a soulful singer with a beautiful, warm voice, he mesmerizes his listeners with his own brand of modern East African folk music, singing in his mother tongue of Luganda and accompanying himself on kalimba (finger-piano), marimba (wooden xylophone) and litungu (Kenyan lyre), as well as his beloved flutes. He was born and raised in Uganda, but left as a political refugee in 1982 following his brother’s death. He spent some time playing with the popular African Heritage Band and the Bacchus Club Jazz Band. During this period, Samite studied Ugandan traditional musical instruments and rhythms with passion.

In addition to Samite’s musical career, he is the founder of the non-profit organization, Musicians for World Harmony, whose mission is to enable musicians throughout the world to share their music to promote peace, understanding and harmony among peoples, with a special emphasis on the displaced or the distressed who could benefit most from the healing power of music. Samite has visited Liberia, Ivory Coast and Rwanda to see for himself if the dismal picture of these countries painted by the western media was accurate. He found that in spite of staggering losses of human life and devastation, the survivors of Liberia’s civil war, Rwanda’s genocide and decades of civil strife in Uganda were full of hope and caring for themselves and each other with great resourcefulness and dignity. The PBS documentary, “Song of the Refugee” documents his remarkable experience. When he sang his songs of peace for the people, the light of joy returned to children’s eyes and young and old responded with songs, dances and instrumental performances that had an immediate, positive impact on everyone present.

This May 2007, The Music Therapy Department is partnering with Samite and Musicians for World Harmony to support an outreach effort to bring music to children in orphanages in Kenya and Tanzania. 9 music therapy students have been selected through a competitive process to travel and exchange music therapy services and gain knowledge of the importance of music and its uses in other cultures.

IMPORTANT: change in birthday party date

It seems that because of events that have come up at my work, the most sane way to handle time conflicts is to move Lars' birthday party to

Sunday, March 18th (instead of Sunday, March 11th).
It would still be 2:00 - 6:00 open house, cake at 4:00.

Is there anyone who would have been able to come on the 11th, who can't come the 18th?? I feel really badly about this... Please let me know. The other option is to have it later in the day on the 11th.

gas. gas, gas, gas. vent. vent, vent, vent.

So I was reading in an on-line newsletter for parents of kids with g-tubes (yet another club to which we have gained membership) how you can not only put into the tube, but pull out of it, too. Thought I'd do a little experiment & pulled back on the very large syringe. Hmm, gas. Hmm, lots & lots of gas. Hmm, Lars is smiling, giggling as gas is removed from his tummy in droves

It's called "venting."

Several times a day we pull gas bubbles out of that little tummy. Lars is feeling much better & calmer in general.

IEP meetin'

Good news & bad news.

Good news is that Lars did great with Janet & Frieda while we were at the very long meeting, and that we and our advocate plus Lars' TVI Suzie, OT Sue, & Speech therapist Julianne all did great at the very long meeting.

Other good news is the town people are being very accommodating & giving us everything we ask for regarding Lars' education. Almost.

Bad news is the one thing they're not going to agree to--seemingly under any circumstances--is a placement at Perkins Preschool. Which is what we believe will be best for Lars.

I'm not going to post my whole analysis of today's meeting, because of the nature of the internet. I will be happy to share it with basically anyone except someone from our town's school district. If you'd like to see it, just let me know.

Thanks to lots of people's input at the virtual IEP meeting, here are the parent concerns & vision we came up with.

*Warning: lots of text ahead.*
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Parent concerns:

We are fully committed to Lars remaining engaged with his environment; he is highly vulnerable right now to withdrawing and developing self-destructive and tactile defensive behaviors. We are concerned for his safety in an environment where there may be active children who are unaware of the extent of his disabilities.

Because of Lars’ severe visual impairment, all staff working with him should be knowledgeable in both the theory and the practice of educating blind children with multiple disabilities.

The staff need to understand the development of blind and multiply disabled children, and have extensive experience with children like Lars so that they can envision where he could go in his development, understand clearly the developmental breakdown of all the steps necessary to get there, and have the skills to help him progress step by step at his slow pace. For example, we have been told by physical therapists with decades of experience that Lars can become a walker, but a PT who does not have a lot of experience with children with visual impairments and multiple disabilities wouldn’t necessarily know how to help him learn how to walk.

We are concerned that Lars will become lost, confused, and/or overwhelmed in a large, busy classroom, and that this will lead to him shutting down. He needs rooms that are physically small, with just a few other children, and an environment where there are not multiple sounds occurring at the same time. In addition, if Lars is to have the opportunity to increase his visual capacity, he requires a visually uncluttered space, as well.

Research shows that 80% of what sighted children learn is visual. We are concerned that Lars has no way to access or make sense of 80% of a visually-oriented classroom program and what happens in it, and that in such an environment he would spend most of his time waiting, listening, perhaps being entertained or calmed…but not learning what he needs to be learning. His program needs to be tactile-based and auditory-based, and he requires teachers and therapists who have experience with children with CVI and their specific needs.

Recent evaluations and assessments reveal that Lars has limited receptive language, as evidenced by his as yet inability to follow simple, one-step directions, and because he does not yet have imitation skills. Therefore, common teaching practices will not be effective with him. Rather, staff need to be trained specifically in severe delays and blindness. We are concerned that common teaching practices emphasizing learning via receptive language and imitation will be utilized in a program where staff do not specialize in visual impairments in combination with other disabilities. Working well with Lars requires tuning in to a different frequency: deep comfort with non-verbal and non-visual, tactile communication.

We are also concerned that he could feel quite isolated with only sighted peers because they would likely not be able to understand his facial expressions and subtle forms of communication, and we fear this would prevent interactive non-verbal communication with other children. Lars needs a teacher who will actively facilitate his social integration into every aspect of the classroom.

Because of the depth and complexity of Lars’ disabilities, a collaborative program where staff communicate as a team on a regular basis is crucial to him making progress. His success will also include significant involvement from us at home.

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Parent vision statement:

We hope Lars will make a smooth transition into a school setting. We believe that with appropriate support, Lars will learn through actively moving his body and exploring his tactile environment. We hope Lars will be positively engaged in facilitated social activities that allow for interaction with peers throughout his day. We believe Lars to be capable of improving his standing, balance, gross motor skills, and range of motion to make incremental progress toward the ability, eventually, to stand and walk. We hope Lars will solidify his ability to sit independently for an extended period of time, and will increase his ability to functionally use his visual capacity.

We would like to see Lars increase the ways he can communicate his wants and needs in all settings, for example choosing between two objects or concrete tactile symbols, or reliably indicating that he wants to continue a preferred activity through any intentional mode (vocalizations, facial response, gesture, sign, augmentative communication). We expect Lars to work with clinicians who will exploit all opportunities related to augmentative communication tools and devices to enhance his ability to communicate to family, staff, and peers throughout his day. We would like to see Lars develop a stronger awareness of spatial and environmental orientation through the effective utilization of the Lilli Nielsen Active Learning approach and equipment, which has been shown to be effective for children with disabilities such as Lars’.

We would like Lars to continue to engage in meaningful music therapy experiences that support his overall development and growth, and his personal musical self-expression. We would like Lars in a setting where music therapy is embedded into the fabric of the program.

This will be Lars’ first experience of school, and we hope he will internalize the concept of school as a place where he is engaged and engaging; where he feels a sense of belonging and contributing to his environment; and where, through meaningful experiences and relationships with staff and peers, he will develop a deeper sense of himself and his place in this human community.

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Next step: they finish the IEP and get it to us, they try to get a program in place for him to start in two weeks, Mama writes music therapy objectives (I said I would), and we wait to see what they say. Then we can accept or reject sections of the IEP, and the placement. If we reject the placement, I guess we go to mediation, and if we can't agree, to a hearing.

IEP meeting's covered

Sounds like we're covered for tomorrow's IEP meeting, thanks to Frieda & Janet with Lars & Tamara transporting Joa.

Whew. Many, many thanks.

Going back to my all-day class now.