A family's story

But Wait….

You know that scene from A Christmas Story where Ralphie FINALLY gets his chance to tell Santa that he wants the Daisy Red Rider Carbine Action BB Gun….and he draws a total blank? When Santa suggests a football, he nods along, not sure what to do with himself…just kind of frozen in the moment? And, how once the elf puts him on the slide and out of the way, with a football on the way for his big gift, Ralphie jumps into action and awareness?

Well, that pretty much sums up how things have been going here with Jake’s education the past few weeks. We have been in a whirlwind of activity. I know that I had mentioned that Jake had an IEP meeting coming up on the 30th of January. Let’s just say that it didn’t go quite as we had hoped, and let’s just say that placement changes were encouraged, and only once we had a few moments to actually breathe and take it all in did it seem like the placement was a *wee* bit premature and a *wee* bit too restrictive for our liking. We THANKFULLY did not sign when we left that morning. And we THANKFULLY observed the new placement and voiced our concerns with the coordinator of special services. And we THANKFULLY spoke VERY FRANKLY with Jake and made some discoveries that were heartbreaking.

Jake’s anxiety and stress were at fever pitch. He was miserable. He was not able to pull it together in school to learn or demonstrate that he knew what had been taught. The staff was incredibly frustrated. They feel that they have tried everything. Something was broken. During the first weekend of February we sat down to talk to Jake about his schoolwork, anxiety and struggles at school. We also wanted to see how he felt about being in a smaller environment for his entire day…instead of for most of it. After promising that he wouldn’t get into trouble…and that no one else would get into trouble…Jake spilled his soul. He is being bullied. Other kids in the class are being bullied. By one kid. ONE KID.

Jake said he liked the resource room, but he also really likes being with all of the other kids. He admitted that he was scared to go back to his class. He didn’t feel comfortable in there all the time. He indicated that this child made him feel scared and upset. He said when the child talked to him, Jake’s head got fuzzy and his knees felt squishy. I probed more…I think Jake was having the “fight or flight” response a lot during his day. NO WONDER he was so heightened and dysregulated and unable to hold it together. I wrote to his team…and I know that I was not the only parent to bring up the bully situation lately. And yet, that bully is still in the classroom….

We also strongly suspect that some of Jake’s avoidance behaviors are learned and reinforced. We were told more than once over the past few weeks that when he gets really stubborn and quiet and does his little shake thing where he won’t do the work (he’s avoiding curriculum that is difficult for him) some of the staff let him just do what he wants…like sit there and take as much time as he wants to regulate. Or to sit there and draw so that he can calm down. Or he purposely knocks his paper on the floor and goes under the table to pick it up and takes a few minutes…and they let it happen. Because, well, he needs breaks. You might be thinking, Nomygodtheydidnot. But, yeah, they did…

Hubz and I aren’t saying that a more restrictive environment is never a possibility…but we are saying that we want to exhaust all options before we get to that point.

We had a second IEP meeting the other day to get a Functional Behavior Analysis done for Jake in his current setting. We really want the behavior analyst to observe and give us some data and information surrounding what is producing the anxiety at school. We have our ideas. The members of the IEP team have theirs. We are not exactly on the same page. At points during our meeting, I honestly felt like we weren’t even in the same book.

We meet again in March. By that time, he should be more comfortable with using his assistive technology at home and in the classroom. The behavior analyst will have enough observations and interviewing and data collected to address the FBA. With that, we should hopefully be able to put a BIP into place for the remainder of the school year. Aaaandd, we’ll meet again at the end of the year to determine placement for next year.

One thing I truly do not understand in this whole process is how we got from the IEP in October where things were going ok…not super-duper fantastic, but ok, to well, he needs to be in a really restrictive environment. It’s like going from the first chapter in the first book of a trilogy to the climax of the entire story arc at the end of the third book. ARGH!!!

AAAAaaand another thing…as a parent it is incredibly frustrating to have 2 children in the same district…in the same SCHOOL, and one is getting the right supports and curriculum and so on and so forth..and the other is just…not. It makes my head spin…my heart ache…and stirs some passions within that I didn’t know existed.

I will guarantee one thing….they’re going to hear me roar.

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Comments on: "But Wait…." (1)

  1. I’ve had the same experience with the school going from “he’s doing good” to “restrictive enviroment.” At times it seems as if they don’t want our imput. For example our school district decided to remove all non-verbals from the autism program (which to me is unacceptable.) How can a special ed teacher for an autism program not want to work with non-verbals? In the end I opted for the most restrictive enviroment (in the district) the MPH (multiple physical handicap) program for the simple reason that the teacher was direct, honest, careing, concerned, and genuine.
    I felt that my son had the greatest advantage working with someone who sincerely wanted to work with him. I was very disappointed with my son’s Kindergarten teacher for not bring issues to my attention prior to the PPT where she recomended a change in placement. She seemed nice enough, but I was concerned that the recomendation reflected her feeling that she couldn’t manage the needs of the non-verbal students in her classroom. Since going to the most restrictive enviroment, my son has been able to increase his inclusion time to include extra hours in a full day schedule – while the other autistic and special needs children in the program have half days (shorter days than kindergarten!)
    If I had it to do again I would be hesitant to put my son in a more restrictive enviroment, however in this circumstance I think it was the best choice. I know your pain. The PPT process has been the source of many sleepless nights for me. I love what you said at the end: “It makes my head spin…my heart ache…and stirs some passions within that I didn’t know existed. I will guarantee one thing….they’re going to hear me roar.” It’s so important for us as parents to be active participants in the PPT process. I find the most difficult thing for me is to channel my passion productively. We as parents, want what’s best for our kids. Learning how to advocate effectively is a challenge. I wish you (and all the parents out there) strength and hope for the journey!

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