Subscribe
Previous Post
What gets “disclosed” and what does not was the issue at the center of the recently released document concerning Hannah Poling. I have “disclosure” and “transparency” of a slightly different sort on my mind right now. Charlie’s IEP meeting is today and, amid reading over documents and evaluations and forms, reading up on IDEA at Wrightslaw, writing up some things, reviewing the draft IEP, I’ve been thinking about how key good, honest, and trusting communication is not only in creating Charlie’s IEP, but for his education as a whole.
Charlie’s speech is very limited and—aside from what I observe in his behavior—we rely completely on the reports from his teacher to find out how his day at school went. In Charlie’s school program, the teacher also makes home visits and parents can visit the classroom regularly, so that the teacher can see what Charlie is like in his home environment, and vice versa for us.
This kind of relationship most often gets tested when confusion and conflict arise and, more often than not, when Charlie is struggling, as revealed through behavior problems. As I’ve noted here before, Charlie had a history of regular self-injurious and aggressive behaviors when he started in this school district in June of 2006, and, after careful teaching, these are very much under control. We’ve all learned more about what might be triggering an anxiety attack in Charlie, and what to teach him so that he can ask for a break or to calm himself down. In the past, hearing another child crying has really upset Charlie. He used to get very distressed; now he has been asking to leave the room, or just waits it out by putting his hands over his ears.
Parents of autistic children in Wilton, Connecticut, have started a petition so that school administrators will hold a hearing on the district’s autism program, the May 1st Wilton Bulletin reports. An Autism Program Report (funded by the school district) was issued in October 2006; parents say that “little to none of the recommended changes had been put in place, and their greatest concern is the time to intervene, and possibly make drastic changes to their children’s education, programs and futures has, in many cases, come and gone”:
The parents said the mechanisms put in place for parental involvement and interaction with the autism program are broken.
The Autism Task Force, which is comprised of school staff, attorneys and a group of parents, does not allow for much input, Nancy [last name not mentioned]said.
“The Autism Task Force has one selected parent member who’s allowed to speak,” she said, adding the other two parents must remain silent. “I don’t know what intent there is for parental input.”
The Parent Advisory Board was dismantled in 2006, and when it was reconfigured, parents were told they could apply to serve, she said, with the schools choosing the advocates allowed on the board.
What’s more, Nancy said, members of the Board of Education do not attend meetings of the two groups, nor are the meetings recorded. So reports to the school board members come from the administration.
“I just think that there’s too many layers of filter between us and them,” said Mary.
By petitioning for a public hearing, the parents hoped to bring their concerns about the program directly to the policy makers for the schools.
“It really is about the parents wanting to build bridges with the Board of Education,” said Nancy, another mother. “It’s not productive for anybody, and that’s what exists,” she said of the often adversarial relationship between parents and the schools.
The Wilton parents seek to have more input and interaction among the parents, task force and advisory board and school board about the autism program and about staff hirings. 64 signatures have been collected so far. While it is not clear is the petition has statutory power to force a hearing, parents hope that the Board of Education will recognize the importance of the issue and hold a hearing of its own.
Needless to say, this sort of situation is not what one hopes to find oneself in, talking about statutory requirements and hearings instead of teeth brushing and writing the ABC’s. How ironic, Jim and I have often mused, that communication is so often a problem among parents and professionals, especially considering how hard we all work to teach our kids to communicate.
We’ve so far been very pleased with Charlie’s school program. I’ve already toured Charlie’s new classroom and spoken at length to his new teacher, who has also worked with Charlie’s current teacher on his new programs on his new IEP. Charlie will most likely have the same speech therapist, occupational therapist, and Adapted P.E. teacher. We are seeking ways to have Charlie participate with peers in activities that his interests lie in, in music and sports. We are constantly on the lookout for new ways to teach him to work on reading, typing, writing, and basic math skills.
I’ve been emailing back and forth with the other mothers of students in Charlie’s class. As our kids are moving up to middle school, we’ve decided that we really want to have some sort of ceremony to commemorate the transition, and that everyone’s made it this far, and is moving on—growing up, as I was reminded yet again when, without my asking, Charlie yesterday evening took two bags of groceries out of the car, carried them in (and his towel from swimming), carried the bags into the kitchen, and set about putting everything away in more or less the right places. (Green bananas won’t get too ripe in the refrigerator.) While he did that, I put away laundry, answered some work emails, and kind of had a moment to catch my breath.
That’s all I’ve to disclose of Charlie’s IEP (for now).
1435 days ago
[...] and I know the reverse has occurred. Charlie’s teachers and I have worked hard this year at letting each other know what is happening; email and regular visits by Jim and me to the classroom, and of Charlie’s [...]
1455 days ago
[...] was a few schools and households ago and Charlie’s had his best school year ever. His teachers and therapists are trained in crisis management procedures and it always seems that [...]
1462 days ago
[...] had his best school year ever this past year and we’ve gradually been trying to dine out more. It’s the end of the [...]
Raising a disabled child has helped remind me to communicate well with parents of my students, disabled or not.
In general, my husband does the school communication because sometimes teachers don’t like having another teacher appear critical of their work.
Not off comment at all! We had terrible communication issues in our previous school district and the staff did not seem adequately trained; I guess I just feel better as far as our relationship with the teachers about being able to communicate better we with them. The bad communication spilled over into nobody trusting each other.
And, we often suspected that some aides got their jobs because they “knew” the right person, rather than based on their qualifications. It was clear that everyone was trying, but without training and supervision, they could not help Charlie deal with his behaviors and be able to learn.
It’s the case that our current district is in a position to fund a lot of programs (for kids who are not disabled, too) and (it seems, but more could always be done) to support staff. I always worry about instructors getting burned out.
Okay. Some comment off the subject here??
I am so happy that Charlie’s school is such a good match. I wish it was so for most children with special needs. It has certainly not been the case for us or for many children we know. Sometimes open and honest communication is not enough. Many of the schools are not given the funding or the training to help many of their students.
@Landru,
Glad the meeting went well! “Universally adored”—-I think I know what you mean!
@odile,
I have heard of people taking their children to “chicken pox” parties to expose them to that disease. I am puzzled about your request.
odile, I doubt that anyone who reads and comments here wants to risk killing your child.
Kristina, we’re lucky; we had our IEP meeting for my stepson the other day, and the staff were great–the staff are motivated and professional and communicative. The only serious issue we had to discuss a bit is that the boy is so universally adored that we’re all (parents and providers) total suckers for his charm.
hi,
I live in Tucson, I would like to have my daughter exposed (30 months) to measles. Can someone contact me at odile_wolf@hotmail.com if they have (or know someone with) measles cases and are willing to have a playdate.
thanks
Odile
Hi Kristina,
I am shaking my head as I read your words, as I recognize that some things simply never change. I know of the Wilton, Ct. issue. Is it just human nature, that staff doesn’t want to be told what to do by parents? They often resent outside professional input as it threatens their position.I used to beg the question, do you think we want to be here? Was autism part of our design when dreaming of bringing a child into the world? Nevertheless we all play the hand that is dealt and our children come first, autism and all.
That is why even infintessimal strides are valued as gold. It is wonderful that your system has supported your efforts. Home visits are key and the fact that you are welcomed into the classroom is impressive.
Keeping communication open is a fragile dance.
Best wishes and much success at your PPT,
Robin