Dar has an IEP today. The purpose of this meeting is to tell us what the school district wants to do with Dar in September. We were once told that he had to go to “transitional kindergarten” (or TK) because he was born in October 2009. Because he’s experienced months of regression with each transition, his teacher told me that he’s going to recommend that instead of TK, Dar gets two straight years of kindergarten. Wifey and I aren’t convinced that’s better.

As feared in the previous post, I’ve become a little less complacent and a little more concerned. The district has now had him for 16 months, and the needle’s barely moved, as their own reports from this week confirm. For example:

“…With regard to picture identification, Dar has difficulty visually attending to pictures and therefore has made limited progress toward identifying pictures of objects. Typically, Dar attempts to select whatever picture is closest to him and only orients his eyes toward pictures for fleeting moments when given maximum cues. Attempts have been made to modify presentation of pictures (e.g. laid flat on a table, on a 90 degree felt board, 2 inch x 2 inch pictures, 4 inch x 4 inch pictures), but no change in attention or performance was observed.

“The PLS-5 was attempted with Dar, but he had difficulty attending to tasks associated with its administration. For example, when presented with picture identification tasks, Dar attended to the pictures for a fleeting moment, then verbally protested and hit himself when the clinician continued to prompt him. Due to Dar’s decreased participation, scores could not be derived or reported.”

“In terms of concepts, Dar shows understanding of body parts and emerging understanding of colors (per ABA report). However, he is not yet showing understanding of concepts such as size, shape and categories.

“Dar responds to his name during structured activities, but his responses can be inconsistent especially as his interest in the activity and the individual wanes. He understands ‘no’ and ‘stop,’ particularly when these terms are paired with a gesture. However, he often requires a physical prompt to follow the directive ‘look.’

“Dar is primarily a nonverbal communicator who uses hand leading, simple gestures (e.g. hands up to request spinning), vocalizations (e.g. screaming, whining, babbling), roughly ten single words and picture exchange to communicate. Currently, Dar uses the following words/word approximations: open, all done, more, hi, bye, dada, tickle, and go…He often uses speech to express himself in the context of routine activities and requests…However, Dar rarely uses words spontaneously.”

“He initiates communication occasionally throughout the day with familiar adults, but inconsistently reciprocates when communication is initiated with him. He rarely interacts with other children, but sometimes smiles and makes eye contact when another child persistently interacts with him. He often requires maximum prompting to engage in turn-taking activities with both adults and children and does not yet answer yes/no questions.”

“Dar currently has difficulty displaying most cognitive skills, in all settings, due to difficulties maintaining joint attention, very limited communication abilities, and motor control delays tied to his autism and cerebral palsy diagnosis. In general, it is difficult for Dar to attend to materials in the classroom that are not heavily sensory-based experiences.

“Dar is an independent and generally cheerful boy who enjoys being engaged in his own world. His interest in a variety of objects appears to be fleeting, with a particular object having a clear preference for a short period of time (typically a few weeks) before becoming irrelevant. Dar will seek out certain sensory based activities within the classroom as mentioned above, but will typically avoid these same activities if he is directed to them by a teacher. Dar has shown some limited interest in peers during the school year; allowing certain peers to engage in play nearby, or even to mimic/echo Dar’s self-directed play schemes. There have been some attempts to incorporate more peer interactions this spring, but those attempts have been mostly unsuccessful.

“It takes Dar a long time to build rapport with new staff members and new environments. Depending upon the length and frequency of interactions, it can take between 3 to 5 months for Dar to become comfortable enough around a new staff member to engage with them without protesting or tantruming…

“Dar can become easily frustrated by a variety of activities within the classroom environment. When he is frustrated, Dar will often cry out. This can then further spiral into screaming, stomping his right foot, hitting the right side of his head with his hand, thrashing on the ground, or biting the skin between his thumb and index finger on his right hand. If a teacher attempts to intervene/block the hitting or biting, Dar may attempt to bite the hand of the intervening teacher. It should be clear that Dar has never demonstrated an intent to cause physical harm to others, and these actions are an extension of Dar’s frustration level at a given request or activity.”

What do I think when I read these? Poor Dar. Pobrecito. He’s so alone in his little head. I wish I could join him in there and comfort him and love him, but I can’t. I mean, I can, but trust me, I can’t. If there’s a harder thing about parenting, I don’t know what it is.

Then there’s a recent report from his insurance-paid speech therapist. Excerpt:

“Dar’s symbolic play skills are estimated to currently range up to a 12 month age level. Without adult set-up, Dar engages primarily in non-symbolic object exploration/manipulation.”

“In-context instances of comprehension (words, commands, and/or simple questions), given up to three repetitions and natural gesturing if needed, currently ranges 5 to 25 instances per visit, with an average of 13.4 instances per visit over the last 47 visits. (Previous range 5 to 14, average 8.8).

“Dar’s receptive vocabulary is estimated at over 100 words, but he is inconsistent in demonstrating this knowledge. Dar responds with varying consistency to his name being called. Dar still requires context, natural gestures and repetitions to augment his comprehension and processing of most basic, functional commands.

“Dar’s receptive language skills are estimated to continue to fall within a 10 to 13 month age range.”

“Dar currently ranges 18 to 35 delayed verbal imitations of word shells per visit, with an average of 26.3 delayed imitations per visit over the last 47 visits. (Previous range 14 to 23; average 19.9)

“Dar currently ranges 6 to 29 different spontaneous verbalizations of word shells per visit, with an average of 12.3 spontaneous verbalizations per visit over the last 47 visits. (Previous range 5 to 13; average 9.5)

“Dar’s expressive language skills are estimated to continue to fall within a 12 to 15 month age range. Dar’s development of expressive language skills is impacted by cognitive challenges, challenges with focused sustained attention to objects and activities not of his own choosing, social interaction challenges, and the dual motor speech challenges of childhood apraxia of speech, coupled with a childhood flaccid dysarthria.”

…aaaaaaaaaand now wifey and I have our IEP questions ready to go. Among them are:

–          This September, will he have a full-time aide? Why or why not?

–          How many kids will the aide have? How many hours a day or week will the aide attend to Dar? Does the aide help with only academics, or does the aide also help Darwin with other parts of his day (diaper changes, eating, transitions)?

–          Where would he be for transitional kindergarten? For kindergarten?

–          According to Eileen at Family Resource Network, the Oakland Unified School District has kept some disabled kids in pre-school for another year, instead of moving them forward to kindergarten or TK when they aren’t ready. Is there a reason Oakland can do that, and Berkeley can’t?

–          Can BUSD send Dar to other districts if his needs aren’t met in Berkeley?

–          What are the other options, outside of TKs and Kindergartens in the BUSD? What have other children done?

–          We have heard of disabled children being referred to “non public schools” that aren’t necessarily private. Have you heard of these?

–          Is there any special-needs class for kids Dar’s age, in Berkeley?

–          When you say that you want to put Dar in a mainstream class, is it because a) Dar’s condition is not severe enough for a special day class, or b) there’s no special day class in Berkeley?

–          If, after these reports, Dar is considered qualified for mainstreaming, what would his condition need to look like to qualify for more specialized services? What would you be looking for to make such a judgment? Are there metrics for this? (For example, if we project that in a year he’ll do something 7 out of 10 times, and in a year he does it 0 out of 10 times?)

–          Can we get ourselves on the record saying that we think full inclusion for our child is a bad idea?

–          If we can prove that Dar is not benefitting from mainstreaming, how soon can we change his situation?

–          Can Dar split his time between a mainstream class and a more specialized class?

Wish us luck!