Saturday, October 20, 2007

Now that the shock has subsided, I'm in full-out anger and fix-it mode. Yes, I'm angry. Mostly at the one resource director who seems to not be able to see beyond my mention of Asperger's...no matter that the mention was that he has not been diagnosed with it. I really think she is projecting her own experiences with ASD and SPD/SID onto Ryan and not giving him a fair chance. She even admitted to me later that day that she hadn't been intending to suggest another placement for him that day, but that it became more obvious to her during our "discussion" that it was what needed to be done. So it's pretty much a foregone conclusion in her mind right now. I sent an email to the principal yesterday, and this is what I said:
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Dear Mr W.,

Thank you for taking the time to meet with me yesterday, along with Mrs B {resource director}, Mrs C {teacher} and Mrs M {asst principal}. I know that we all want what is best for my son Ryan.

I want to state how disappointed I am in the way the meeting went. I left the meeting feeling as if I had been blindsided. To my knowledge, this meeting was set up so that we could discuss the problems Ryan was having, to discuss his OT plan, and to figure out ways to help him. I was actually looking forward to the meeting so that I could get more information about his situation to take to the OT and the child psychologist in order to better plan his therapies. His behaviors at home are very different than at school, so there was really no way for me to tailor his therapies to his school needs until I know what those needs are. I had questions about his behaviors that I didn’t even get to ask, that I’d been waiting until this meeting to bring up so that I could do it in person. I didn’t get to ask them because within a very few minutes of the meeting starting, I had to defend an OT plan that hadn’t yet been advised of the extent of his school behaviors (which was a reason I requested the meeting in the first place…to get the information to give the OT), and then shortly after that when I raised the possibility of Asperger’s, the discussion quickly led to placing him elsewhere. I didn’t even know his behaviors were serious enough to get a Notice of Concern until I got 10 of them at once only week ago. Yes, I knew they were a problem, but not that they were serious enough that we’d be discussing another school at this point.

I talk to Ryan about each and every aggressive situation that he is called on at school. He’s generally pretty honest about these things. Some of them are within the realm of typical boy behaviors. For example, he got called on punching a boy in the stomach. When I talked to him about it, he told me this boy (his friend) told him to do it, and then dared him to do it. That doesn’t make the action right by any means, but is fairly typical 6-year-old boy behavior. One of the others happened when Ryan and a friend were playing “football quarterbacks” and they were tackling each other; it was mutual play and the other child unfortunately got hurt. Many of the other aggressive behaviors point directly to his sensory seeking issues and we have just begun the therapy for that. We’ve been told by his therapists that we should see definite results in several weeks (not perfect, but a definite improvement) with the deep pressure methods, giving him heavy work, and various other techniques geared at maturing his nervous system and helping him learn to cope.

I came away from the meeting feeling like I was being asked to remove Ryan from your school before we’d had a fair chance at addressing the problems. I didn’t even know the extent of the problems until yesterday’s meeting, and we didn’t even have a chance to really address them before the statement of placing him at another school was brought up…which means they didn’t really get addressed at all. I left feeling that it was a foregone conclusion in Mrs B’s mind that this is what needs to be done. But I will tell you, I am not giving up on this. I feel like Asperger’s was considered a definite conclusion and as such was used in defense of her “decision”; however, Ryan has not been diagnosed with it. Until we are able to figure out which behaviors will respond to OT, I don’t see how making the assumption that these behaviors are Asperger’s based and as such will take 2-3 years to work out, is in Ryan’s best interest. Please understand that I am not in denial here, I just want to get to the true root of the problems rather than relying on speculation.

Here are our plans for working on this situation now.

1) Occupational Therapy – I will discuss with the therapist the need to address the issues that directly involve school (social and learning) first and more intensely. I will schedule his sessions twice a week at minimum.
2) Observations – I will schedule school day observations with both his OT and his psychologist, so that they can see first-hand what the problems are.
3) Psychologist – he will receive a full psycho-educational (and psycho-social?) evaluation. I was under the impression that this had already been done, but apparently that was just preliminary. We will address any issues that arise from those evaluations.
4) At home we will pursue an elimination diet with Ryan to determine whether artificial additives, gluten, and/or dairy are contributing to his behavior in the classroom. We will also work intensively with him on techniques to curb his sensory seeking behavior.
5) We will look into alternative options for his schooling, in the event that the results from the above measures warrant an alternative placement.


We are at St M's for a reason. I truly believe we were led here, even though we currently live closer to three other good Catholic schools (L, H S, H T). We are not giving up on Ryan, and we are not giving up on having him at St M's to receive the Catholic education we desire for him. If in the end we need to place him someplace else, either temporarily or permanently, we will do so. But I do not feel that this being a foregone conclusion is helpful to any of us.

Thank you for your time.
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Oh, one thing I forgot to mention, is that I called the resource director after the meeting on Thursday and got her to allow us until Winter Break to make some progress. She doesn't think it's going to help, but she'll "allow it".

Yesterday we also had another session with the OT. I told her what was going on, and asked her if we could work intensely to make this happen...and she said "Heck yeah!". She's confident that with some of the therapies we can lessen his sensory seeking behaviors and improve some of his weaknesses to make things easier for him. We are going to increase his sessions from once a week to twice a week (once during school hours). We are implementing the Wilbarger Deep Pressure and Proprioceptual Protocol, and Brain Gym exercises. He will be getting a Disc-0 Seat for his chair and for sitting on the floor, to allow him some movement. I'm requesting that for 2 or 3 weeks, they allow me to pick him up for the hour that they have lunch/recess/restroom/rest time and do some deep pressure and heavy work with him, and get him back to school ready for the afternoon. I don't know if they will allow that, but I'm hoping it's a modification they'll be eager to make. We picked up a mini-trampoline this morning, and I'm letting him have sole use of it for getting some sensory input. We're also going to buy the Rainy Day Indoor Playground (trapeze, swing, cuddle swing, chin-up bar) for the new house. Today we started an elimination diet...this week or two we are eliminating artificial colors and flavorings (which will hopefully be a pretty permanent elimination). In a couple of weeks we'll eliminate dairy/casein. And then we might attempt gluten. All of these things have anecdotal evidence towards causing some of the same behavior problems that Ryan has. So there we are. I feel better with a plan.

I spoke with my aunt for over an hour that night. She is the superintendent for a small school system in Indiana. Her opinion is that we need to get him into the public school system for services. But...his diagnosis at this point is not enough to get services for him...they are really relatively minor at this point. And I really do not like our public school system. They are massive...85+ elementary schools alone. They don't have a great reputation (although some individual schools are better than others). And at this point in the school year, I'd only be able to choose our local school rather than seeking out a magnet one or Montessori or something that might be a better "fit"...our local school is traditional just like the school Ryan is in right now, so how is that change going to be good? I'm resisting that route, but it is an option if need be. What I think we will do is home school him in conjunction with attending a local cottage school that meets twice a week. It would only be for a semester and then we could explore the public school options for 1st grade. His current school did give me some other options...but short of winning the lottery soon, we just don' t have $10K plus per year to send him to a private school. Even if we withdraw our tithing from our church (which is what pays for his school right now), it wouldn't help all that much. She pretty much told me that public school wasn't a good option; home schooling wasn't a good option; but here are some private schools that might be. Ugh.

That's where we are now, anyway. Having plans definitely helps.

1 comment:

Gina Pintar said...

HUGS Ginnie, I have not been here in a bit but came over when I noticed you were not on the board as much.
I saw in a prior post you were worried that you were failing Ryan. Reading today, it seems you are doing whatever you can to help him! You are doing a great job looking at how to help him. You know that we do the GF/CF diet. I track my son's behaviors every day. I use a 1-10 scale for his typical daily behaviors. We also use the principals of ABA traning and use positive reinforcement for good behavior in class (no hand waving, staying in his seat, no self talk)
email me if you have any specific questions. We also did the brushing with great success.