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.