My "Hose" in Band

Yesterday morning I emerged from my meeting at the middle school a very happy mom. We all know that isn't always the case, but when it is, it feels good. Really really good.

Flashing back: when we were setting up Daniel's IEP and schedule last spring I was very focused on getting him para support during lunch. We had dropped it back in about 3rd grade when he sat with "his girls" in our safe little elementary school cafeteria. He continued to be independent during this time. We had had a few minor incidents over the years, but honestly, not much more than MOST kids experience. Middle school lunch sounded like a nightmare to me. It was a new huge place and he wouldn't know half of the kids. I wanted him to have support and also thought that the person with him, could help him find appropriate people to sit with and maybe even facilitate some conversations. I got what I asked for.

What I gave up was support in band. I know. Really? you ask? I know you are thinking I was nuts. Maybe I was, but I was blinded by the lunch room, and actually I had some good reasons for giving that up. One being that his para did not go into band with him in 6th grade. She would check in, she would go get him if he needed to leave, but really, he was pretty independent. So I went along with it. What I DIDN'T take into account was that band was going from 2x's per week to 5 x's per week. The size of the class doubled and they went from 1 percussionist to 4. Had I KNOWN that I wouldn't have made that decision. IEP tip #1: this is why it is a good thing to have the general ed teacher there when a decision is being made about a class. Had I heard that, I wouldn't have agreed to it. Hind site is 20/20.

Rolling forward. A few weeks ago the last thing happened. I keep calling it "the hose". What does a hose have to do with anything? Read on. My cousin and her husband live in a cute house. It is "cozy" and they bought it as a couple with no children. They now have 2 growing boys and a dog. There isn't much room left. The tightness of the space kept building and building. One day the husband bought a hose. He couldn't find a place to put it. There was not an inch to spare, he proclaimed, "that's it! we have to move!". Is the fact that you have a hose with no home a big deal? No. But it was all of the things leading up to it and the one thing that pushes you over the edge. For me I wrote a note in "the notebook" to Daniel's para asking what music they should be practicing at homeand she sent me back a list. I had NONE of the music at home. He'd (again) been practicing the wrong songs for over a week. That music was my hose. I snapped and said "that's it" we need some help. Was the fact that we didn't have the music a huge problem? Not really, but it pushed me over the edge.

I constructed a very long email, outlining all of the issues and problems Daniel has faced this year in band. Tip #2 a calm fact based email describing all of the difficulties he has had this year. I explained the ways we have tried to overcome those difficulties and how they haven't worked. I explained the impact to not only Daniel, but his peers in the class. I explained that it is no reflection on the teacher, she has done her best, but it's too much. Lastly, I asked them to consider giving him para support in this class. Calm, cool, emotionless facts explaining the problem in detail.

I am explaining these tips because I have been working as an advocate now for almost 4 months. The mistakethat I see parents make is that when "the hose" happens they fly off the handle and make a huge deal about "the hose" when it isn't the hose at ALL. This gets you no where with the school district. They'll tell you "it's just a hose".

The school district had someone collect data, there were discussions. The Special ed director observed a class (guess what happened THAT day? Correct, best day of the year! I suggested to her yesterday that she should be there EVERY day :) I had honestly expressed my concerns that he escalates so much that he may hurt himself or go after someone else. You would think I set this up, but he did grab an adult for the first time since the beginning of 3rd grade, while we were in discussions about this, proving my point nicely. We discussed the hormones and how they are affecting him, I explained how he has gone backwards in some areas (physicality) because of it.

So yesterday morning I sat at a table with the Special Ed Director, the Principal, the Special Ed teacher who handles his case, the band teacher, and the AI specialist from the county (and an intern; I love when they get to see how a meeting SHOULD go) and little old me. My husband asked if I was intimidated. No. Not at all. It is my job now after all, but I have learned it is WAY different when it is someone else's child you are talking about. Plus, I think our district really does a great job (IF you present it right)of working through things. These four months of working as an advocate has left me a bit stunned at how some other districts operate. To be fair, it leaves me a bit stunned at how unable and inappropriate some parents are. But yesterday they genuinely understood AND they gave him support during band. So I'm giving the school props where they deserve it. In a super super tough economic climate, when money is no where to be found they chose to do what is best for the STUDENT. What a novel idea! I'm very very pleased. For now, my hose is just a hose.

Melancholy

I don't know what's been going on with me, but I have been feeling overwhelmed lately. Hence the ignoring of my blog. I keep staring at the space unsure of what to do next. I constantly have people telling me I SHOULD be overwhelmed, I have a lot on my plate, I'm doing a great job etc etc. I don't take compliments very well and usually brush them off with a wave of my hand and change the subject. I, however, don't feel like I should be overwhelmed, yet I know, deep down that I am and that bothers me a bit.

I like to think I take things in stride. But what I end up doing is swallowing it, smiling and (usually) keep moving forward. Every so often I panic and want to hide under my blanket with a vodka and something and retreat from the world. I never do that. Well at least I don't pour the drink. Sometimes I take a few days and retreat into myself and think. Plan. I joke about the voices in my head. They aren't the kind that tell me to do things but the kind that help me sort out what I'm processing at the time.

We got through spring break doing most everything on Daniel and Zachary's list. We went to Grand Rapids and visited the Grandparents. Spent the day at Meijer Gardens saw Monsters vs. Aliens in 3D (which I highly recommend)I loved watching Daniel keep reaching out and trying to grab the objects that appeared to be coming at us. Once when it appeared that water splashed us all he reached over to my husband and wiped off his shirt and innocently asked, "are you wet?" He is so sweet I can't stand it sometimes. We had our Easter Egg hunt and did Easter baskets. Daniel received the Pinocchio DVD in his basket. I've talked about that movie here before. He was THRILLED. They had a GREAT time. It was cold but the sun was shining. All of the reasons were there for me to be elated and I somehow only felt scroogish and glum. I'm in my funk that starts to creep up on me at this time of year. I never see it coming for some reason and yet it always does. It creeps it's way into my brain. I get short with people and a bit panicky. I find myself having to take deep breaths and count to ten before moving forward.

Maybe it's because it's IEP time, carnival, meetings, knowing summer is coming. Summer is my favorite time of year, but it comes with the inevitable transition problems for Daniel, the questions from him that I am unable to answer (like who will my parapro be next year) and the newness of yet another transition.

I have heard back from the school and they agreed to give him a para during lunch. They added in 25 more minutes of speech in another session and changed the language on the transportation issue. All GREAT news, but I still haven't signed my IEP. I'm still feeling a bit empty and overwhelmed and don't know why. I have a conference coming up in a few weeks that usually revitalizes me and gets me going. I'm hoping once these things are resolved I will once again overcome this melancholy feeling. In the mean time I have to get back to baking my brownie/cheesecake dessert for tonight. Maybe those will help me, along with that vodka and some friends.

Here is our Meijer Garden outing:

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Tick Tock Tick Tock

My ten days are almost up. The clock is ticking. And now I am in a flurry of activity to get my changes in. I am not a procrastinator by nature. I am always on time. When I say I'm going to do something I do. I am rather predictable. My predictability for IEP's is that I'm going to put it off. While I went into talk to Daniel's teacher 2 days after the IEP (crying the whole time) I was waiting for a response. She talked to the middle school and some of the things we discussed were met with a positive response from them. So far so good.

Yesterday I sat down with my cup of coffee, turned off the tv and computer snuggled up on the couch with my chenille blanket (only to rip it off at the next hot flash as they've been plaguing me for months now) and read the IEP from start to finish. I made notes on post its (so when the draft went away, my notes wouldn't as per mama mara's suggestion) I came up with several points. I'm just going to paste in the email I just sent to the appropriate players. Here is what I sent (I have taken out some specific names of schools and street names to make it more general for the internet)

Good Morning, Here are the things that I have found that we feel need to be changed with Daniel's IEP. I don't know if this will make sense to those who haven't seen the whole IEP or if you haven't ever even seen one. But these are my points.

1. Functional Performance:

He currently "participates independently in lunch and recess" this is true that currently he does, but we would like that changed. We would like to see Daniel have para support during lunch. This has been the one area at (current school) that he has had difficulty and coming in during 5th grade he had a very hard time. There was teasing from the students who didn't know him and even some from those who did. Some of the kids who had been with him for years were picking on the easy target while they were trying to deal with their own anxieties of a new school. We feel this will be even more likely going into middle school. Daniel will also be quite anxious trying to find his way and doesn't know how to navigate this very social situation of trying to find people to eat with etc. He is just working on starting conversations and navigating a middle school lunch room is a very big undertaking for anyone, not yet Daniel. He has even had an occasion recently that peers were "fanning the flames" with him during lunch. Without para support with him we feel he will be not only lost, but a target.

2. Supplementary Aids/Personnel Supports:

Under para Educator support there are times for (current school) 8:55 - 3:48 entire school day. Shouldn't we add another line with middle school hours with entire school day?

3. Present Level of Academic and Functional Performance:

His birthday is wrong at the top of the page. It should be 1996 for the year :)
Also here, the lunch support is mentioned.

4. Special Education Programs/Related Services

Speech. As I mentioned in an earlier email we are requesting additional speech services beyond the 45 minutes per session, 3 -4 times per month. This is only half of his current services. Of any service he receives (besides para educator support), we feel this is most critical. He needs so much work on his conversation skills. Without those his ability to function in the world will be severely altered. We feel very strongly about this. Daniel currently gets 60 - 90 min. per week PLUS we pay for an additional 60 min. group session outside of school. With the addition of this 60 on top of 60 - 90 min per week we have seen a big improvement and have received numerous comments from the staff of his expanding skills. This wouldn't be a good time for the district to cut back on speech services. He is responding positively to his sessions and it also seems to alleviate some of his frustrations with communicating. We will be continuing our extra 60 min per week indefinitely at this point (and through the summer). So we are requesting one more session of 30 - 45 min in length that could happen during his academic support hour.

5. Transportation:

Do we need to write anything in for this? In my perfect world I would like the gen ed bus to have a closer stop so that Daniel can safely get on the bus without having to cross (major busy highway) or walk up (busy secondary) road to (next street). Ideally the bus would pick up at (next street) and turn into our neighborhood and pickup on our street. This would take very little time. Daniel is always prompt and would be waiting for the bus. He also needs the seat behind the bus driver to be reserved for him and this should be written in the IEP. It has been in the past.

Thank you so much, we look forward to hearing from you.

That's it. I've never asked for this much change before. I'm curious to see what will happen. Today is the last day before spring break. I doubt we can get this hammered out today! So we will go over the 10 day period.

I mentioned to my walking buddies today that I had put these changes off too long. They countered that I was "processing" everything. I do believe this to be true. I don't think I would have asked for more speech had I signed earlier. I said in an earlier post that something was bothering me and I didn't know what it was. Well I think that was it. There is just so much information it's overwhelming. I don't know what other IEP's are like but mine is 20 pages long. His supplementary aids and services are two solid pages. It's a lot. Meanwhile I asked my walking buddy who is a nurse why with my hot flashes I'm getting chest tightening and feel like I'm gasping for air, she alluded to the chance that it is a bit of a panic thing and being overwhelmed. I tend to show a very calm exterior and panic inside (where I don't even know that I am!) and I guess that makes sense. I'm glad I'm getting some exercise again. I think it will help. I can hear that clock ticking. . . is it the hot flashes or the IEP deadline? Maybe both.