Saturday, December 26, 2015

The power of writing

On Friday, I officially was declining to talk about, or work on, several issues in my life. I'm taking a break from it for these 2 weeks of Christmas break from school for Pyrope and Obsidian. This has necessitated me to tell several people that I won't talk to them about issues until January 4th. For those that don't know me and the problems I'm facing, each wishes me a good break and that my problems will be gone or greatly minimized after my self imposed break. It makes me smile wistfully. I'm taking a break because I know that none of my problems will be going away any time soon. A couple are problems that waxes and wanes, but they are more lifetime issues. I just have the misfortune that all of them are in a season of waxing at the same time. With the major additionally situation of Obsidian's school closing at the end of this school year. It is my only issue that there is a clear end date to.

This break is mainly to strengthen me to make it until July. The number of issues and hurdles is daunting when I think about them collectively. The comments of wishes that things will be better come January from those who do not know much, and comments from others who know more that they hope I am finding releases and supports I need, I've been thinking about how I can do that. I was reading about how writing about your feelings has a positive impact on your view of the world, your problems, and yourself. And I came to the realization, I can write. I can write of the road that is so challenging. I don't know where this road is going, or how long it will be. I know it will change. I can live in the today that today is.

Thursday, December 17, 2015

What makes it the 'right thing'?

Last night, the school board voted to close Obsidien's school at the end of the year. The decision had been made months earlier, but it was the formal vote that made it official. Set it in stone.

I was open that I was going to attend the meeting. I kept being asked why. I knew how the vote was going to turn out. Showing up wouldn't change anything. It was just going to be very difficult to sit through and hear the actual vote. To choose to watch the actual formal decision to do this. To bear witness to the formal decision. I could only respond because it is the right thing to do.

Outside of members of the administration that participate in the public board meetings each meeting, there were 3 of us from the school. The principal, one teacher, and I. In addition there were principals from 2 of the other 8 other schools. A reporter. And two other members of the community. The three of us from the school sat in a row, flanked by the other two principals. Silent tears sprang from the three of us as the formal recommendation was read by the Superintend to the Board. We had all read the exact words before. We had all heard them spoken before. But the tears came. And continued as the motion was accepted and seconded. And continued as each member of the board spoke saying how hard the decision was to make, and it was a low point, a very deep low point, to make the vote they were about to make. Each of them alternately avoiding looking at the three of us, and studying us. After the motion to close the school unanimously passed, a board member immediately asked to speak. She was granted permission. Her question was one I had voiced privately and publicly at a meeting discussing the closure. How was this to be communicated to the families? The superintendent replied a letter had been given to the principal already to send home with the students the next day. He then confirmed had the principal confirm that he had the letters and was prepared to send them home. The principal attempted but his voice failed him, so simply nodded his head in acknowledgement that he had the letters and was prepared to send them home. The board member spoke again, saying that it was clearly stated by the parent that the parents did not want to find out through social media, from their child who had heard it at school, or a news agency about the closing. They wanted to hear it directly from the District and that they wanted to be the ones to tell their children. And she felt that it was a reasonable request, and the respectful thing to do as a District. Send it home in a letter the following day, the parents would have already found out. The District has the means to push out messages immediately, through email, through texts, and through robo calls. Another Board member said that was a perfectly acceptable use of those forms of communication. The treasurer piped in his agreement that it was an acceptable and legally sound way to communicate the closing of a school. Another board member chimed in that it should be to all families with children enrolled in the district, as it would effect the entire district. At that point the Superintendent asked the communications director if she could put that together and send it out tonight. Her very short response was "I'll do it immediately." She picked up her purse and materials and left. I've never seen her leave a meeting early. I mouthed "Thank you" to the board member who had spoke and advocated for the parents to be told immediately, that night.

The remaining items in the meeting I didn't hear a word that was spoken. I was reflecting on how much harder it was to hear the words than I was anticipating.

This morning I went out to breakfast with my best friend. The tears came again, easily. By nature, I'm not one to cry easily. I was trying to find words to describe to her, and even to myself, why I felt it was the right thing to directly expose myself heartbreak to attend and bear witness. My friend articulated it better than anything I had come up with as a response or for myself. I was there for support. To publicly show I am willing to walk even the hard road with the school in support of the school. For the principal. He had no real choice in attendance. He did not bear witness to the meeting alone. The teacher and I from his school family were there, sitting and listening and mourning with him. Two of the other principals in the district were there. To put a literal hand on his back as it was read. Knowing that they moved up to principal when he did or if their building was sitting on land considered better for the needs of the BOE and transportation department, it could have been them.

Yes. That was it. It was the 'right' thing because I was choosing to allow my emotions be seen in a public meeting. I was choosing to support and be witness to the school both at events of proud accomplishments, and events of sorrow. I was choosing to support the person who had to be there.


Monday, October 19, 2015

Visions of the Future

There are changes happening in our school district. We currently have 10 buildings. The 'capacity' for these buildings is roughly twice current enrollment. 3 buildings are being torn down and going to be replaced by 1 building that will house 2 of the current buildings. The 3rd building is the Board of Ed and has not been announced where it will be 'housed'. But as it is coming down in the spring, it will need to be moved this summer. Changes to where children go are going to happen at the end of this school year. Fact. What these changes are going to be. Rumor. Currently one primary is K-2, the other primary buildings are PK-3. So one intermediate is 3-6, the other two are 4-6. The new building when it opens fall of 2018 will be 6-12. The district says that all primary and intermediate buildings will house the same grades. Fact. Currently, in addition to the buildings that need to be torn down, the buses are kept in what is going to be the construction site. Fact.

I love the primary school my boys attend(ed). Pyrope moved on to the intermediate school this year. Obsidian 'should' have this year and next left at the primary. I love the primary school. I have had my issues with the school, but have always been able to work them out. I'm the president of the PTA this year. Even after my boys are gone from this school, I would love to see it intact for future students. It does what it does very well. However, this school has more students in it than any of the other primary buildings, and more than 2 of the 3 intermediate schools. This school is by far the most central geographically. It also has the space to keep all of the buses.

I don't anticipate it will be a school next year. I wish I saw the future differently. Talking to the staff at the school, they feel the same. From a purely logical and logistical point of view, it is the school to close first. Eventually, I see all of the primary buildings closing as primaries. Well maybe keep one of them as a PK-K. The intermediates all have nearly the space to be 1-5 buildings. The 'plan' will be announced in January to February.

In the mean time, I'm starting to do research. If Obsidian is going to an intermediate next year, will I be able to move Pyrope to the same intermediate? Obisdian's learning needs dictate that he can not go to the intermediate that Pyrope is at. At the end of last school year, Pyrope was only going to be at the intermediate for 4-5, and then move to the new campus in 6th. But now the new campus won't be open until he is starting 7th. If next year 3rd is considered intermediate, then Obsidian will be moving on a year early in addition to Pyrope staying a year longer. Having two kids in the same district, in the same level of school, but in two buildings is problematic for multiple reasons. In addition Obsidian's ETR is due for renew next year. At this point, it is best to have his ETR updated by a team that knows him. I've started the ball rolling that his ETR will be reopened early, sometime this winter. If I were to wait until the official announcement of the fate of the buildings, it very well would be too late to complete his ETR by the end of the school year.

Then there is the issue of being president of the PTA of the school that is likely to be closed. The treasurer is new to being a treasurer, and is not a rapid learner. How our by-laws are currently written, if we were to dissolve (which will need to happen if we no longer have a school), all assets will need to be turned over to the state. I've started to look at our by-laws. In other by-laws from similar organizations in our state, some have it if they dissolve, the non-profit is allowed to choose another non-profit for their assets to go to. At a minimum, we could give whatever we have to another unit in our district that our children will now be served at. Even prior to the final dissolution, looking at ways to spend the majority of our money before the end of the school year.

While some of these plans, such as the ETR and revising the by-laws and standing rules, will be done this year. Other plans, will be quiet, semi-hidden plans. If I were to wait until I know for sure if these plans are needed, it would be too late to complete them.

So I'm in a season of lining up ducks. Ducks I wish that I didn't need to line up. But the compeleling need to know my ducks are in place, or at least being rounded up, trumps my desire to bury my head.

Sunday, March 29, 2015

Growing toward 'typical'

A common goal for many parents, even us parents of kids with disabilities, that they will grow up to hold a 'typical' job. A job that they can support themselves and/or their family.

But many of these kids need extra help and support, particularly when they are younger, in school. Particularly for academics. As your child is in a 'resource room', 'self contained classroom', or 'special education school', they have extra help. Sometimes it is clear that this is the environment they need. They are behind grade level academically, they struggle to keep it together in the environment they are in, they fall apart when they do happen to be exposed to the regular education environment.

Then comes the day, they are at grade level. They are doing well at grade level. In general, they are not having too many issues in their limited exposure to regular education environment.

How do you know when it is time to push to try for more 'inclusion'? You know it will be a struggle. You know that academics will at least temporarily suffer. You also know they need to learn to live in a less sheltered environment.

Sometimes, being an adult is hard.

Tuesday, October 21, 2014

"I told you so"

In the weeks following my sister's engagement, she asked me if I thought there was the potential of the marriage ending in divorce. If I saw any potential challenges to the marriage. She wanted me to tell her then, so if I later told her "I told you so" during a separation she would know if I had truly thought so prior to the marriage.

I was left speechless for a minute. As my answer was trying to find the right words.

First off, I would never say "I told you so." or "I knew it." or any other such phrase to any friend, let alone sibling facing such a challenge. How entirely unhelpful and unsupportive. And what a person would need is empathy and support.

Next, every marriage has its challenges. Every marriage has the potential to end up with separation and/or divorce. Some challenges might have shadows of forewarning. Others, not so much. How willing are you and your partner to spend time on working on your marriage. To make it a healthy one. To ensure you grow together, not drift apart. Or be pushed or driven apart.

I said the above immediately, and with peace. I proceeded with caution. After all, I know her. I know how she can hold words against you. I know how she can take words more personally than intended.

Do I know you well? Yes. Have I listened to your stories of your relationship? Yes. I have meet and watched your chosen partner? Yes. Can I make guesses at where your personalities might clash some? Yes. Can I see some potentially challenging situations that will take hard work? Yes. Does any of this really predict if your marriage with be a healthy and successful in your view? No. I don't see any abuse going on. Or manipulation. Or lying. Or other behaviors that would make me warn you to leave the relationship. I would have long ago had I seen those.

I then asked her to think if she really wanted to hear my specific thoughts. And if she was willing to agree that me voicing them was not me condemning the marriage, or even doubting its ability to survive. Just observations of things that might take work, that might pan out to be challenging. With the idea of every healthy marriage has it challenges and parts that take work. I told her to call me back the next day to answer me if she really wanted to hear my thoughts. And if she would be able to move past the fact I said them.

She did. And I spoke specifics. There was silence. She quickly ended the conversation by saying what I said was nothing like the reasons others told her without her soliciting their advice. That my thoughts were about specific personality traits of both. Of potential real situations in the future. The others had been more about each of their pasts. With that she hung up. She didn't call to talk for 2 weeks. Then started to call and the conversation was never spoken of.

Then a month before her wedding came. I became a target of anger. A blind nonsensical anger that our mother even questioned what I did to incur this wrath. And I'm left wondering, did I strike too close to accurately predicting a challenge?

No matter what. I will never say "I told you so." It is one of the most useless and hurtful phrases that can be spoken when said towards a negative situation.

Tuesday, October 14, 2014

But you take care of yourself, right?

Periodically I have the same conversation. It is mostly with acquaintances or strangers. It is sometimes with coworkers or not close family members. Very very rarely with casual friends. Never with close friends. The irony is that, it is those whose least business it is feel the most free to ask me. On the other hand, my close family and friends know.

I can tell how the conversation starts if it has a chance of going 'there'. Sometimes it does, sometimes it goes a different direction.

I have Type 1 diabetes. For nearly 20 years. It is an autoimmune disease. There is nothing I did to cause it, or contribute to developing it. It is often seen at the 'bad type' of diabetes. It is not bad per say. It is a different disease with some similar end results as type 2. It has some different challenges. Some to most type 1's retain some ability to produce very small amounts of insulin because their beta cells regenerate. The large majority of type 1 women who become pregnant significantly increase the amount of insulin they produce themselves. It is never enough to go off insulin, quite the contrary, when you are pregnant you need vastly larger amounts. And then there are those of us that produce no insulin at all. And those of us in that group that become pregnant, an even smaller group still produce an absolute 0.0 even while pregnant. The people in that final group are at particularly high risk of developing complications (both during and after pregnancies). Men are the same in that there are a small group of men that produce no insulin. And even a smaller group of men that seem more prone to get complications than others with type 1. I participated in studies for both of my pregnancies. I am in the very small group that produces an absolute 0.0. This virtually guarantees I will get complications. And those complications will be more severe.

I also have another autoimmune disease. And have been slowly developing a 3rd, it is more of a question of when I will cross the clinical threshold to officially have that diagnosis. It will come.

Periodically, my health becomes more precarious than other times. For the last 6 weeks, that has been the case. I've been hospitalized and gone through a series of outpatient appointments and procedures. Some days I've felt like absolute crap, but apart from the days that I was hospitalized or banned from driving for medical reasons, only those who are close to me have any idea. Life goes on, and I go on living it. Just with added complications and tasks on my to do lists.

But then there is the casual acquaintance who starts to ask me about my diabetes. And then turns to the 'but you take care of yourself so you don't have any complications, right?' I do try to take care of myself. Very hard. Even when medical professionals accuse me otherwise. But am I 'healthy'? Do I have 'complications'? How exactly are you judging me by these measures? Do you have any idea how the cards are stacked against me? And on top of this, why do you feel it is okay to ask such a personal question?

Sunday, October 12, 2014

Quiet victories

As I look on Facebook, friend's post about how their child got a perfect score on a test. Or has a 98% for the entire semester.

On Friday as I was walking in at the end of the day to close the book fairs financial books, one of Pyrope's teachers told me how Pyrope got a 90% on his spelling/grammer/phonics test. Granted it is a 2nd grade test and he is in 3rd, but that is what he is taking this year and he has never come close to a 90% before. It was rare that he got above a 70%, with extra supports. The 90% is him being in a class with 'just' the regular ed teacher, mainly 2nd graders (a couple other 3rd graders that are behind), and him. No extra support. So a 90% is something that was very hard to get.

Then as I was walking to get something from my car, another teacher stopped me. Pyrope was able to finish a 13 page math test (don't ask me what I think about giving ANY 8 year old a 13 page test of any kind). He did have extended time, but he was able to finish it all. This is an accomplishment in itself. This math test was the test that the regular education kids were given. He got a 71% (you need a 70% to consider to pass). Up until last spring, he was not in regular education at all for math. But he was doing fantastically well in the remedial math, 95%. However, this was at a slower pace and not covering all topics. At my pushing, he was put into regular education math, with some pull out tutoring. His grade plummeted to a 69%. However, no one, myself included, really thought he was even going to do that well. It was a very pleasant surprise to all of us. This year, it is being attempted to have an 'inclusion' math instruction. Meaning his resource room teacher team teaches with his regular education teacher. But it is the same material (for the most part). And it is working.

I don't measure success by the same measuring stick that others do. Nor do I have the easiest time to express why a 71% and a 90% on tests that were given the same day are such an accomplishment. But he knows. And I know. And his teachers know. And God knows. And that is enough.