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.

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.

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.

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.

"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.

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?

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.

Preparation

Today marks the beginning of a new school year. This school year is the first time both boys start on the same day. Preschoolers and kindergarteners start after the rest of the kids go back. This last week has been full of a multitude of tasks to hopefully make the transition and the school year go smoother. The usual school supplies. New glasses for both boys (Pyrope is forever misplacing his and Obsidian's were always sliding down his nose). Emails to their teachers regarding various points of their IEPs. A meeting with 2 of Pyrope's teachers. Various tasks for the PTA to get the year going.

As I was at the school for Pyrope's meeting, I stopped and talked with two of Obsidian's teachers. They thanked me for the email I sent, as they did not receive a copy of his IEP until this morning. I walked away very disturbed by this fact. Obsidian has educational challenges, however what I was disturb with was my email was only in regard to the medical aspects of his IEP. To have his teachers not know about his medical needs up until the day before they are in charge of his well being for 7.5 hours a day, is worrisome. Very worrisome. I'm aware that there has not been any 'issues' with Obsidian at school. Although many (including school district staff) attribute that to being proactive and not letting things get to that point. Obsidian has heat intolerance, it is very hot right now. Obsidian has fasting intolerance and can not participate in very active play unless he has had a snack (and recess is before lunch), nor can he go more than 3 hours without eating (lunch is over by 12:30, school doesn't let out until 3:55). He has occasional episodes of hypoglycemia. All very important 'details' to know about a kid in your care. To not have your employer tell you about this until less than a day before... when I'm sure they have other things on their 'must do' list?

This is why I'm always so involved. Involved in ways that my boys don't necessarily see. Just trying to set the stage so they can be healthy and live up to their potential....

Passing

Early in US history, there was a phenomena known as 'passing'. This was when an African American presented themselves as a white person to be allowed to have the rights of a white person.

Currently, 'passing' is becoming an used phrase again. But for an entirely different group of people, people with disabilities. Mainly people with autism, but all sort of people particularly with neurological disabilities are involved with this new, very-different-but-not round of 'passing'.

Neither Pyrope or Obsidian are considered neuro-typicals. Pyrope carries the autism diagnosis. Obsidian does not have an 'official' diagnosis, yet, but it is agreed it has neurological effects. I have never allowed their challenges or differences be an excuse. Partly as an extension of this, they want and try to be like their neuro-typical peers. They try to 'pass' as 'normal'. Yet, they aren't. And sometimes, they just can't. Then I'm stuck watching them fail and get in trouble over something they simply can not do that their peers can. I'm okay (not happy, but okay and for the most part accepting) with watching them fail. It is life. But watching them get yelled at and in trouble for something their bodies or minds simply can not do, drives me crazy. When do I interfere? When do I simply watch and offer comfort and advice? When do I explain while for a large part of the time they can 'pass' but sometimes they can't. And they need help. How do you teach a child, or anyone, when to try to come up with ways to compensate for your challenges, and when to offer a simple "I'm not able." because you aren't?

Straws

Recently, I've had a string of problems. Serious problems. There have been several points that I've felt that 'the straw that broke the camal's back' has landed on me. Although some of those straws were more like logs, or at least sticks.

Today I had "Thanksgiving" at my house for my family. Now it wasn't on "Thanksgiving" (as that will be in 4 days on Thursday), nor did we have any of the traditional "Thanksgiving" foods, as we will be having all of them in 4 days. My mom and my 3 youngest siblings will go and be with her family (in a group that rivals my immediate family), my brother who is closest in age and I will be going to be with our respective spouse's families.

I understand we a bit of a loud crowd. There are 4 boys essentially between the ages of 4-7 (yes, 4, 5, 6, and 7 year old). There are my 3 brothers (2 of which are 21 and 23 and play with the younger group of boys and can really add to the boisterousness of the play). There is me and my sister. Don't forget Mom. Or the 4 significant others of the siblings. My house is not tiny, but nor is it large. We are family, and talk, and tease, and play. When multiplied by our numbers (and ages, a 4 year old boy for example creates a significant larger amount of activity and noise than say a 70 year old woman, and then when you multiple it by essentially 6 boys horsing around). I had rubber bands shot all over my house. Matchbox cars launched down my stairs. Various kids and adults dressed up as minions. Rousing games of hide and seek. Spirited discussions of what is going well and not so well in everyone's lives. Two 1/2 lb Reece's Cups spit between the 4 little boys (giver of Reece's cups did not ask parents prior to giving... and after a little boy has received a Reece cup, there is no taking it away). Temporary tattoos applied. Pants getting wet by unknown means (pee? juice? water from the sink?). A random missing sock (foot still in shoe). Adults 'improving' children's toys. A child hair dresser cutting another child's hair (you would think with that many adults that it couldn't happen, but you would be wrong). I enjoyed it. My boys enjoyed it.

For Thanksgiving itself, I will be hosting Jett's family, 240 miles from here, in a hotel room, well hotel suite (it has a living room/eat-in kitchen and then a separate bedroom). It will be Jett, the boys, myself, my mother-in-law, my sister-in-law, and her younger daughter (age 13). Her older daughter (age 18) will be with her boyfriend and his family. I will do the majority of the cooking, I will be doing the 'hosting' duties. I will pack up what I need from my house, and transport it there. My mother-in-law is not in the best of health. And she has never really liked to travel. My sister-in-law 'doesn't have the time' to make a big meal. She doesn't have a table to have a meal at in her house (Literally, there is no kitchen table or dining room table in the house, they just eat on plates sitting on the couch, in front of the TV... typically not together). I won't do Thanksgiving dinner in a restaurant or sitting in front of a TV on a couch (well, couch is not big enough, so I would be on the floor, but any rate, everyone will be at a table(s) for Thanksgiving dinner if I have anything to do with it). So the hotel thing works out best. I like cooking. And I like hosting. (Do like doing both better in something larger, that at least has an oven and full size stove, that I don't have to pack up so much of my own stuff and bring, but I can make due.) For the most part, the day is spent watching TV, and having meaningless conversation about materialistic things. It annoys me. When I'm not cooking, I probably will read a large portion of a book. I will take my boys to the hotel pool by myself. Maybe my niece will join us. I will most likely not learn a single thing about what others are currently doing and liking and disliking. I don't dislike the quietness, I do dislike the not being with each other. We sit together at a table (mainly because I make us). We sit together in front of a TV. But there is no meaningful to me interaction. I try to do it with a good attitude. I reserve, I plan, I shop, I prepare food, I cook, I make sure everyone's drinks are filled, that everyone is comfortably seated, I serve, I try to keep the boys reasonably quiet, I try to have things the boys can share with their Grandma. I try to smile. I try not to bring up any offense conversation, or make any comment that is considered too offensive. I try to present the whole thing as 'good' to the kids and that I want to be there. If not, I need to graciously step aside. I do not want to pass on a 'bad' attitude or vibes to my children.

Jett spent all of the day, minus 30 minutes he was downstairs for dinner (and the first 10 minutes, he was washing dishes and cleaning the kitchen as we started to eat), upstairs, in his office. He came down after everyone left. He asked if I just found out my sister-in-law is pregnant. I was stunned. She had announced she was pregnant in June, she is due in January. How did he not know? I know, he was probably upstairs. As he is for every time family comes over that is not his family. Every time we have guests over that he did not invite.

When the boys were little, I always thought and said, that as they got older and had their interest and activities, he would be more involved. He would not go off nearly as much and do his own thing. This summer, for the first time, I realized to the extent that is just a dream and really false hope of mine. When one had a belt test, he wanted to go to a meeting of his aircraft club, so he did. When one wanted to go on his birthday to hear an orchestra play outside, he choose to stay home so he could go to bed at his normal time so he wouldn't be tired the next day at work. He didn't come to Pyrope's first hockey scrimmage of the season because it was a beautiful night to go on a motorcycle ride with a friend. Choosing to go to a slot car swap meet instead of a mass where Pyrope was reading a petition and being enrolled to receive two sacraments in the coming 7 months. And it goes on and on and on.

And I've started to truly move on without him. When I force him to go to things he doesn't want to, he continually asks when we can leave, in between sitting in a corner and reading his magazine. If he is not going to be with us when he is with us, then I don't want him there. Or if he is just visibly and verbally counting down the time to when he can leave. We will go with him to car shows, and air shows, and historic places, and museums that interest him. But don't rush me and the boys when we find something that interests one of us there more than it interests you. When you want to go to a specific museum and other sites in an area for spring break vacation, we will do it. And enjoy it with you. When we (and it is we, I enjoy the trip, and the boys have been asking ever since coming back from the same trip 2 years ago, they both bring it up at regular intervals as to when we are doing it again) want to go back to the ocean, spending a week being with extended family, playing on the beach, eating lots of food, and in general just being together come with us and enjoy it. His question is always "Well, can't you handle it on your own?" Yes, I can handle it. And I don't want to make you miserable, or to have you with a negative attitude with us. But I really really want you to want to be with us, doing things we enjoy doing. Trying to enjoy it yourself, even if it isn't your first choice. We do, and try to enjoy, things that are your first choice that aren't ours. I will do it alone, and make excuses for you not being there, before I 'make' you be there, and have you miserable, and you ruining our experience.

But I don't like it.

And I don't like making excuses. I like the idea even less of saying in front of our children the real reason of you would rather not be there doing things with them, with us, so you aren't. I know eventually, if not already, they know this. But I just can't bring myself to saying it.

I don't like being asked at school where you are. I don't like it when we go to friend's houses and be asked why you aren't there. Or why you take off immediately after eating, leaving us to socialize (and we like the socializing). I don't like showing up at family functions without you, time after time after time. I don't like the parents/teachers/coaches making comments how they never see you. And if you do happen to bring them, you go sit somewhere else reading instead of watching the boys and talking with the other parents. Seeing who their friends are. Getting to know their friends. I resent after working a day, the second I walk through the door, you take off, either to another part of the house or go somewhere. That when you get home from work, you need 'time' before you want to be with them. That if you are in charge of dinner, you make them food, give them plates in front of the TV. And even if they ask you to sit on the couch and eat with them, you go eat alone. Every. single. time.

I understand needing some me time. But a balance is needed.

Why did I not see this coming? If I did, I don't think my choices would have been the same....

Being green

'It's not easy being green' said Kermit the Frog.

And right now, I quite agree. It's not easy being who I am. I'm glad I'm me, but it isn't easy at times.

A few weeks ago, I started getting suspicious that school was not going well for Pyrope. Socially, he was doing fine. Academically, I was concerned. Some of the comments he was making, and how homework was going was not pointing in a good direction. When I learned that there were going to be 3 'classrooms' with a total of 92 kids in his 'pod' (it is an 'open floor plan' school, meaning they have large spaces and then there are multiple 'classrooms' in that space with only book shelves and cabinets at best dividing them. In his 'pod' there are 2 second grades and 1 first grade, each being taught by their own teacher, all at the same time, in the same room), I was worried how he was going to be able to focus. When I found out that there were 32 kids in his class and one teacher, I was more worried. Pyrope is a child that could easily fall through the cracks. I was not getting much home as far as work was concerned, so I asked to see some work, or to at least know what his current grades were/are. I got non-answers from his regular education teacher. At that point, he was getting 30 minutes of push in services for math in the classroom, and 15 minutes of pull out services. Not by the person who helped make his education plan, but another 'special ed' teacher. A brand new special ed teacher. The SPED teacher who is responsible for his IEP, was oddly and uncharacteristically quiet the week this was really hitting the fan. I finally had enough of the email exchanges and just put in writing that I wanted a meeting of the IEP in the next two weeks. The next school day, I got a voicemail from the Principal saying that he thought that having a meeting was the best idea, but Pyrope was doing 'wonderful' this year. On Tuesday, I get 2 tests home. One in math, one in language arts. 57% and 66% respectively. Wonderful? The next day, while I was at work, I got a phone call from the SPED teacher that is responsible at the end of the day. It confirmed some of my fears. Pyrope was doing 'wonderfully' because he was sitting quietly in class. He was not particularly learning, but he wasn't causing problems. As of that day, all of his math time with the SPED teacher started being done in the resource room. I was asked to extend my 2 week time frame by a few days because the SPED teacher had been quite ill and not in school and needed a little extra time to pull together everything. I agreed. The IEP amendment meeting was this week. The going over of what was happening in math was straight forward, and I agreed. No more push in services for the year, and he will not be graded/required to complete any math papers that are done while he is in the regular ed classroom. I had gone in concerned about what was going to be done with language arts. Last year, he was keeping up with language arts in the regular classroom. It is clear, this year, he is not. He had no 'goals' on his IEP for language arts, nor was he getting any services for it. I saw the SPED teacher getting nervous. When she said "Now to talk about language." I knew where she was going, and I saved her the agony. I said I knew he was not keeping up, and what was she suggesting. It is to pull him out to the resource room for the majority of his language arts time. Each day, he will spend 65 minutes with her (not the same SPED teacher as math), and another 30 minutes daily with the Title I teacher (which also works on language arts). Essentially, he is at school 400 minutes of a day. 40 minutes is lunch and recess. 50 minutes of that is 'specials', which is art, music, library, and gym (if the school week has 5 days, then it is rotated which special they have twice that week). Between math and language arts, he will have 140 minutes of resource room (and 1-2 times a week he is pulled out for speech for 30 minutes at a time). Give or take a few minutes, he will spend half of his instructional time outside of the regular education classroom (when you factor in things like getting coats on/off, getting packed/unpacked from home, traveling to different parts of the school). Pyrope is aware of why he is not in the regular ed classroom, and frankly, he doesn't like it. He wants to be with the regular ed classroom. He also has a vague awareness of his challenges. He has an awareness that the majority of other kids in the resource room are father behind than him, he wants to be challenged. However, with his crazy 'pod' environment, coupled with the ridiculous student to teacher ratio (how can any one person teach 32 seven year olds at the same time?), with the complicating factor of Common Core: he can not effectively learn in the regular education class. I have tried to smooth things over with the explanation that different people learn differently and what is best for him at this point is to be in the smaller class for part of the day. He has voiced his dislike, but is too easy going to really fight me too much. I still feel bad. Given a smaller regular ed class, with 4 walls, he could most likely learn in it. But it is simply not an option. The options that exists at this point is staying in the regular ed classroom and not learning a lot, going into the resource room for about 1/2 of his day and most likely keep up or come close to it academically, or pull him out and homeschool him. The first is the option he wants, but as the adult, is not even a consideration at this point. I've considered homeschooling, and if the resource room option does not work out, I will do. But it is still not easy to be green. For me or for Pyrope.

And then there is Obsidian. (Academically things aren't going well for him either, but that is a different unrelated story.) Specifically Obsidian and Tae Kwon Do. 6 weeks ago, the center he goes to once again decided that how they were promoting him up is not working. So they came up with a different set of belts/promotion system for kids that start when they are 3 or 4 (there have been issues with other kids, Obsidian just sticks out more than the others because he has the physical issues on top of the young age issue). Pyrope belt tested and moved up to the next room last month. For a series of unrelated reasons, Obsidian did not belt test last month, but will this month. However, he will NOT be getting a purple belt like Pyrope. He will be getting a green belt with a black stripe, and he will be staying in the room he is in until the following belt test. At which point, Pyrope and Obsidian will have the same color belt again, but will be held to different standards, then the belt after that, Pyrope will get a brown belt, and Obsidian will 'just' get a black strip on his blue belt. Obsidian is both ticked and confused about this new sequence he is going to be going through. He has told us, "It's not fair". Jett and I both reply it is fair, Pyrope can do skills that Obsidian can not. Obsidian has to work and learn how to do those skills to be considered the same level. Then smart ass points out that at various times he will have the same belt as Pyrope but not have to do the same things. And he has never been held back before. He has points. Legitimate points. If from the beginning Obsidian did something different than Pyrope, and was promoted based on merit, not on length of time, that is what he would expect and I would doubt that there would be an issue. I would be all for it if both were promoted on merit, not time. Pyrope comes close to learning all of the needed skills in 3 months, but not quite at times. There is something to be learned, and valued, from a program where you have to correctly complete a skill to move on. If not your stuck where you are until you can. Changing the 'rules' after 20 months is hard. Particularly when you were told the rules were going to change before, but then didn't. I agree how the center is doing promotions with the youngest kids is not working. I don't particularly agree from a developmental standpoint, or a social, or moral/ethical standpoint of how they are changing it. Nor do I think it is particularly going to work. I tried talking about this, but language barriers and their lack of knowledge of typical developmental levels I did not get far. Its not easy being green. Or staying green in this case for Obsidian.

"Free Time"

I have been lucky, blessed, and created the circumstances that I'm mainly a stay-at-home mom. I have never fully given up my paid profession. Sometimes I work more, sometimes I work less. It depends on my family needs and the needs of my employers. Currently (but very soon to change), I'm working for pay less and essentially only on weekend. Most, if not all, SAHM (and dads) get their share of "you have all the time" and "it must be so easy". Dipping into both worlds, I seem to attract even more of these comments when I'm in one of my working for pay less phases. Particularly from co-workers. I recently got a comment about how having an 11 day vacation from work is so nice but I wouldn't understand because all I have is free time. I was ticked. Let me tell you about all of my "free time".

Now both of my boys are in school. I still don't have 'hours' of free time. Obsidian has a minimum of 1-2 appointments a week in the middle of school. Two days a week, an hour and a half of my 'free time' is spent at the school helping, prodding, and keeping chaos and noise to a reasonable level during lunch. There is not enough staff to ensure kids get their food and actually eat it in the 20 minutes they have to do so without help. So I help. In many of the lower grades in particular, there is a lot of prep work that needs to be done. Papers to rip out of workbooks. Word flash cards to be copied, cut apart, and made into sets for each child. Packets to be made and put together to be sent home. Teachers that are underpaid and have 34 seven year old they are responsible for educating and keeping safe and healthy for 6 hours a day. So I help. I copy, cut, collate, listen to books be read, read to your child, go over the math your child just can't do alone, help keep order in the class, and just help how I'm asked. You know all that the PTAs do, well yes, I am an officer in not one, but two of the PTAs. You know the rugs in the lower grade classrooms that the kids sit on, and all of the furniture in the library, the 'free' books your child brings home several times a year, snacks during standardized testing week, smartboards in your child's classroom, the playground, classroom parties, scholarships, and, and, and, why yes, all of those things are brought to you by the PTA. By the hours of volunteering and work that those of us that are active in the PTA do. There are working moms and dads that are active, but most of the heavy 'lifting' are done by us SAH people and those that work part time. Days where the school gets too hot, I have to come get Obsidian and bring him home to cool off. Then there are the literal hours I have been spending each week in the attempt to get the medical care Obsidian needs. I've been learning how to file a formal complaint with the State as of late.

Since you listed me as someone your child can be released to, I get the phone call to pick up your child who has lice, or a 104 degree fever, or is vomiting, and needs to leave school, but can not go to day care for the same reason and you are in a meeting 2 hours away or presenting a large project or whatever other reason you can not get your child yourself. I do not like my own children in these circumstance, let alone another person's child. The said child is usually less than pleasant to deal with. Yet I do it, and do not mind as long as this is not abused. We need people in this world to do this. When your mother needs a ride to a doctor's appointment, or you need a ride to an outpatient surgery, it is me you call or the ride. And I will rearrange my schedule to do so. For this is what people should do for each other.

When my employer is in a tight bind and I get a phone call, I will rearrange if I can to try to help for a few hours or whatever I can.

When you have 11 days off of work, no one calls you during the day because no one thinks you are home. You (for the most part), don't have a chunk of time in the dead middle of the day that little people are depending on you in order to get the chance to eat a full meal. You have 11 days off of what you normally do. This simply does not happen for me. I don't remember when (if ever) that I haven't had a phone call to please come help with this, that, or the next thing. And I don't mind. We need people to be full time paid workers. But we also need people to fill in and help. Please don't tell me how I wouldn't understand how nice it is to have 11 days of free time. I can think of plenty of things I would love to do if I had no commitments for 11 days. I don't get to call in sick, and when I call mercy that I am sick and need help and can meet my commitments, chances are, I'm really really sick (as in the last two times that happened, the one time I got admitted to the hospital and had surgery, and the other I had a CT and was sent home on powerful meds that prevented me from driving). I do have vacations, but this is scheduled just as much as yours. If I'm staying at home for my vacation, my phones are turned off, and my answering machine is set to take messages silently.

So please, don't tell me I don't understand how nice it is to have 11 days off. I do, really. My job is just mainly unpaid, and far more unpredictable and varied than yours.

Away from the screen

At my job, I have a fair amount of 'paperwork'. This paperwork is all done on computers. It is rare that I use a paper for anything other than notes to myself for when I get to a computer (no, I do not have my own, I just have to find an unoccupied one and use it).

I was finishing up my work. It was late, I should have already been gone. Several things that should have been routine wound up not. Whenever this happens, it creates more paperwork. Which means I wind up staying late. I enjoy the 'not routine', but having that much not routine in one day had left me tired and wanting to just finish up and go home. I had no interest in talking to anyone. Most times, there is no one to talk to.

I was just about done, less than 5 minutes and I would have been gone. A coworker came in. She asked if she could tell me something when I had a chance. I said that was fine, expecting her to start talking as I was typing. I quickly realized, that what she was going to say was personal. I sat for a minute, wishing to just continue my typing. And then I did what I should do. I asked if she could wait 2 minutes so I could finish and give her my undivided attention. And she waited, and I actively listened while she talked to me.

I knew I was doing the right thing as I was doing it. I have been thinking about what I did, and how much it is not  being done in the current times. It is too easy to continue typing and 'clicking' through screens while others are trying to tell us something. Important things that mean a lot to them. Our cell phones and tablets are too easy to play with, or check messages.

There was nothing in the conversation that I needed to focus on that wouldn't allow me to continue typing, or using my phone, or whatever other technology. But it was something important to her. And she, and others trying to really express themselves, need undivided attention. We are all that important.

Attitude of Choices

I've entered into a season of reflection. I have an awareness that the direction of my life is about to change. How and what direction are unknown. Choices will need to be made that are going to greatly impact not just me, but my whole family. I think as a consequence of this, I find myself reflecting on what I like, and what I don't, and what I wish I had, and what I'm grateful to have. I find myself thinking, if I have a better understanding of the past and the present, it will somehow help me decide what to make the future.

When Pyrope was 10 weeks old, I met my best friend. Her daughter, A, was 5 weeks old at the time. As we grew closer, so did Pyrope and A. Then I had Obsidian, and 4 months later, she had her 2nd daughter, B. Likewise, the two of them grew up together.

Initially, our parenting was very similar. In someways, it still is similar. Our underlying morals and ethics, and what we want to teach our children is very similar. As time has gone on, how we go about doing this has started to look different. Sometimes it looks very different. Periodically, I have found myself jealous of what she does to parent her girls. In the last year, it has got stronger, and I've found myself at times pulling away from the relationship. Many times I find myself 'blaming' it on the fact that Pyrope and Obsidian have 'disabilities' and A and B are considered 'typical'.

This last year, Pyrope was officially diagnosed with Autism Spectrum Disorder. This was no surprise. I have been asking about it since he was a baby. He was not a child who was 'typical' then started to develop it, it is who he always has been. I have been always very conscious of it, and very conscious of my parenting decisions that promote his attachment to me, as well as him learning social rules and norms. As multiple 'professionals' have said, my constant working on it, is most likely a good part of the reason he is as 'mild' as he is on the spectrum. He struggles in school. I feel mainly because of his ASD. Math is a particular struggle. Nightly, we go over whatever concept he is supposed to be learning in school. This summer, every day, we work on math. Typically for an hour. Progress is being made now. In January, he was at a Pre-K level for math without much progress, now we are at a middle 1st grade level. Each day this summer, he is also required to read for 30 minutes. Then most days, we also work on writing and learning cursive (which is no longer taught in the schools). When he is playing on the playground, I watch in hearing distance. If it is a major issue, I will go correct as it is happening. If it is more minor, I talk to him about it when he comes to tell me something. I write, then go over multiple times, 'social stories' for situations he struggles with. He gets it. Slowly. One of the skills I feel all children should learn, and preferably not from a parent is how to swim. I have always told my kids, they need to pass Red Cross level 4 (or whatever that skill level equivalent is) before they can stop. This spring, Pyrope got a teacher that simply was not a good match (I was by far not the only parent with problems. Pyrope was in a class of 8 kids, 2 did not finish the session, and he was the only child that signed up for the next. Level 4 is a long level, 7 of the 8 kids had been in at least the 2 sessions before together with him.). I talked to the supervisor, and then to the director. He got a different instructor (well the whole level did). There were tears the first day of the next session (as there were from the 2nd class on with the previous teacher) but they quickly disappeared (and he made more progress in that session than he had in the 2 sessions before).

Obsidian loves music. This spring, he decided he really wanted to start taking violin lessons. I gave it a couple of weeks, and he kept asking. After much searching, I found the right size violin, and a teacher that was willing to take on a 4 year old, that has a form of dwarfism, whose hands are proportionately short to his arms, which are proportionately short for his small for his age body. Oh yes, and he also has a learning disability. Daily, we practice what is currently working on in violin. There have been some really ugly lessons. There have been some pretty ugly weeks with practice. Obsidian has to be told it is time to practice each day. He has never stopped wanting to play well, he just doesn't like all of the necessary steps to get there. Such is life my small child, you have build the foundation well to get to the 'good' part. Daily we practice what letters what make what sounds. He is only making very slow progress. Daily we practice his gross motor skills, with very very little progress being made. Still, each day we do it. At the end of last summer, he could ride his 2 wheeler 1-2 houses without falling. With daily practice since the spring, he can still ride the same distance. He is still working on being able to walk down stairs reciprocally without falling. He still can't, even holding onto a railing.

We take both boys to Tae Kwon Do two to three times a week. On the days we do not go, I have them do their stretches, sometime practice kicks or punches, sometimes watch videos of the current form they are learning, and practice their vocabulary and school rules they need to know for belt tests. I don't do all of it everyday, but I some part of it each day.

Then there is my friend. At the beginning of first grade A was behind in math. A had shown signs of good math skills as a preschooler, but the kindergarten that A and Pyrope went to did not have a strong math program. At Christmas time, A was still behind. So my friend hired a math tutor, and once a week (including this summer), A goes to the math tutor for an hour. My friend does no extra math with her in between. A started piano this summer. My friend does not tell her to practice, and A does not seek out to do it on her own. Typically the evening before or the day of her next lesson, she does her piano 'homework'. A also does dance lessons once a week. She simply goes to the lesson, then comes home. She does not practice between. This past school year, B took swimming lessons with Obsidian. She had been doing well. They got a new to them teacher. Obsidian adjust fine, he even started doing some different things. B did not do well. The teacher pushed them to do more, more quickly as well as if the first attempt did not go well, he would make them do it again. She started to refuse to come (and then was not brought) and then was not signed up for further lessons because the last session did not go well.

So lately I've been finding myself wishing I was more like my friend. Or rather, wishing that I could spend time doing things with my kids that are more enjoyable that teaching math, listening to "Walter the Farting Dog" and similar books in halting learning to read style, drilling social rules, drilling on what sound goes with what letter, practicing violin, practicing TKD, continuing with lessons that are 'hard', advocating for good teachers for my kids. While thinking about how I would word this in a post, I had a realization. Even if I had A and B instead of my kids, I wouldn't just hire a tutor and do math no other extra math. I wouldn't take A to piano lessons then not make her practice (just let her initiate if she wants to practice). I wouldn't just do ballet once a week and not have practice in between. Nor would I have let B stop swimming lesson because of her not getting along with one specific teacher when she had been doing well. I can choose to not do all of these labor intensive difficult things with my boys. I could just let the school teach Pyrope his math and reading, and Obsidian his sounds. I could not make Obsidian practice his violin. I could just take them to TKD and not practice on their 'off' days. I could have let Pyrope stop with swim lessons when he came across the difficult teacher. I could let them watch more TV and video games (which is very limited to not allowed) and spend more time at the beach, playground, and pool (we spend plenty of time doing all of these... I just have them spend time daily on other things as well).

However, I think I am teaching a more important lesson than even math, reading, violin, swimming, or TKD long term. If you are going to do something, do it well, with everything you can.

And with that in my head, my jealousy has retreated to a place where she is barely felt. As now, I feel I am choosing this. It has not been chosen for me because my children have 'special needs'. I have chosen it for my children, irregardless of their abilities. With this, there comes a peace in how I'm spending my time, and how I'm choosing my boys to spend some of theirs.

Temper

As a child, I was known for my hot temper, and losing it. Slowly, this has mellowed. Well, my temper remains hot, but it is rare that it is seen. Particularly in public with strangers.

Last Sunday was a rough day. Every turn just did not seem to go well. Pyrope was originally supposed to be going with my 2nd brother to an amusement park. He had been wanting to do something with just one of my siblings, without me or Obsidian. Obsidian loves thrill rides, but is not able to ride much (I think there are 4 rides that he would want to ride) at this park. 2nd brother was laid off and willing. 3rd brother and girlfriend asked to go as well. Fine. Pyrope was not thrilled about girlfriend, but he is an easy going kid. 2nd brother gets called in to work. 6 days a week. 10-12 hour days. Nights. He was willing to go, but would have preferred not to, and I did not want him going with that little sleep. 3rd brother and girlfriend wanted someone else along as well so they could ride the rides that Pyrope is not big enough for. My mom volunteers to go. I check at 9 pm Saturday night, everything is a go for the next morning. They will pick Pyrope up at 9:30. At 8:55 Sunday morning, all is ready to go. I got the Subway sandwiches, packed the other food and drinks, dressed, sunscreen on, and just anxiously awaiting the ride. The phone rings. DB3 and girlfriend have just backed out, girlfriend is working that night. Ticked beyond belief. Initially, it looked like it wasn't going to happen at all, but eventually my mom took him by herself. Pyrope was fine with this, but still asking to do an outing with just the aunt or an uncle.

I'm home with Obsidian, who is mildly upset about the situation. He knows where Pyrope is going. He knows he is not tall enough to ride the rides he would like (we went to a different amusement park in a different state last year that allowed him to ride some of the 'bigger' rides, and he loved them more than Pyrope). That afternoon, we are going to see a children's production that two kids we know are in. I make the friends each a bouquet of bacon roses and a plum/blueberry spider to give them at the end. I get on line to find out the price so I can just bring the money I need and leave my wallet at home. Tickets are $11 each, which I find expensive for a children's theater performance. I also see that in the fall they are producing Steel Magnolias. This sets me more on edge. Basic plot, a young woman with type 1 diabetes is warned by her mother to not get pregnant because it could kill her. She gets pregnant and mom is not happy about it. She has kid, but it causes so much damage to her kidneys she gets a transplant, from her mom. Shortly after, she dies. 30 years ago, this was a more realistic situation. Not terribly probable, but more probable. Currently, this is very very very unlikely to happen unless the woman develops preeclampsia, HELLP, or another complication of pregnancy on top of the diabetes. And then, it would really be the other complication, not that diabetes that causes the demise. Women with type 1 diabetes are more likely to develop these conditions, but they are usually much more closely monitored and caught sooner (which sometimes helps with the outcome of the baby, and almost always helps with the outcome of the woman). In years past, women with type 1 were advised to get their tube tied to prevent pregnancy. Husbands were told if they got their wife pregnant it would kill her. I've received comments about my diabetes and pregnancy, and how I shouldn't. I receive comments about how I can't do a good of a job parenting my children because I have a chronic medical problem. Jett has received comments too. Within the past year, I've recieved questions from parents of newly diagnosed little girl if she will ever be able to have children. I am always walking the line between telling and showing people there is not a whole lot that diabetes stops me from doing. I've gone on awesome canoeing trips where the only help that I can get is from my companions, or continuing down river over 50 miles and then either hiking another 5 uphill or waiting for the next person who comes to check on the 'checkpoint' (which was usually daily, but snowed while we were there, making the path inaccessible by car for 4 days). I completed a triathlon (I was the 2nd last person to cross the finish line, but I crossed). As I was waiting on the beach to start, a woman noticed my pump and said her sister was competing, and her sister always said that she should do a tri with her, but the woman was too afraid that her diabetes would prevent it (as I was completing the bike portion that I really hate, and I was really hating at that point, I thought of her, and kept going). But on the flip side, there is my uncle who is blind and has many kidney and heart problems as a result. There is my other uncle, who died in his sleep of a hypoglycemic episode when he was 32 (just about 3 years younger than I am now). Neither of them are alone, I know many others with similar problems (including children dying in their sleep). There was the case in Wisconsin Supreme Court of the girl who died because her parents believed in faith healing versus insulin. Diabetes can be dangerous. It does stop me from doing some things. It does make me feel crappier than I need to on a daily basis. But pregnancy should not be feared, or avoided, or become the significant factor leading to a woman with diabetes death. I think of the women that I know personally, who have come close to losing their lives due to pregnancy. Only one has diabetes, and her story is nothing like Shelby's. All of these emotions and frustrations are there over a production of Steel Magnolias. I've gone to a couple productions that have made an effort to accurately educate their audiences (and casts) of what is a true threat to current American women with pregnancy. And I've enjoyed those productions. But to do that, an effort has to be made. More has to be added to the play than just the script. Sadly, most of the time this does not happen. So announcements of this play make me cringe. I feel defensive, and angry, and sad. An untruth is perpetuated.

Earlier in the week, I'm dealing with a medical billing issue. When we go see a doctor, we are frequently charged to see the doctor, and services performed (i.e. immunizations, stitches, exc), and then a 'facility fee'. Our new insurance pays for seeing the doctor (after a deductible is met), and most of the time the services performed (as long as they qualify to be performed by that type of doctor in that type of setting, and just qualify) but the 'facility fee' is not covered. We are stuck with this portion of the bill. The majority of specialists in the area (the two major systems) both do the 'facility fee'. There is no option to be seen out in the street, or my home, or anywhere else. So if we want to be seen by them, we are stuck with that fee. Unless I specifically ask upfront, I'm not told how much any of these services will cost, or if there will be the 'facility fee'. These fees usually add up to over $1000 per year, on top of what we pay for our insurance, on top of our deducible (and now they do not count toward our deductible, this is the new wrinkle I was irritated at this past week).  This does prove to be a financial hardship. I'm also in the middle of a very large battle, that I'm not that optimistic about, over getting Obsidian's medication approved by our new insurance. Without insurance or some kind of assistance, we simply can not afford it. Currently it is about $28,000 per year. Every time he grows, his amount increases (or it won't work), which means a bigger bill. By the time he is done with puberty, his dose will most likely be 4 times or more than what it is now. Which means 4 times the cost.

So when I go to buy the tickets, I go to hand over my $22 in cash. I'm informed there is a 'service fee' per ticket. I get angry. I say things I should not have said. In short, I lost my temper and my mouth ran itself with no filter. Things can not be fixed between the organization and I, and I was told I was not welcome back.

And over the past week, I've thought about the whole situation. My dad always told me, I could catch more flies with honey than with vinegar. I understood, but I didn't. This week, I've 'got' it. Had I been able to keep my cool, I could now be trying to engage in a meaningful conversation about the production of Steel Magnolias. Trying to make a difference to that girl child who has not had her children yet, or her husband to be, or her mother. I could be trying to let women know that bad things do happen in pregnancy, but really, they can happen to any one of us. Some may be more predisposed, but many have no predisposing factors. Instead, I lost my temper, felt horrible myself while it was happening (about myself), made others feel bad, and really did nothing to help long term. I'm usually good about holding my tongue. But this is the first time I have really cognitively thought, and emotionally thought out as well, how holding my tongue, no matter how upset, would have been better for all in the long term.

And that is a lesson, a hard lesson, that is worth learning. Now, my prayer is I remember the lesson learned then next time I need it...

Expectations

Since the spring, I've been noticing Obsidian falling farther behind his age matched peers for his gross motor skills.

He has been in PT on and off since he was a year old. More off than on. Last time he was being seen regularly he was 2 or 3. Mostly, I take him in a couple times a year, he gets new AFO's or orthotics for his shoes if he has outgrown his last pair and his PT makes recommendations of things to work on as well as keeping up with all of the activities I do with him.

I was expecting the same. Even though I've been noticing him fall farther behind. And my sister has commented on how he is falling farther behind. And my best friend. So why I was expecting to hear that yes he is still mildly delayed but no need to restart him in formal PT at this time, I couldn't tell you.

And 20 minutes into the session, I realized, that was not going to be the conclusion of the session. Your average parent would not have realized it at that point. Even your average special needs parent. It is a curse and blessing to be an OT. I knew when his PT left the room to get something, that the something was a formal assessment form. The paper she was just writing notes on was not going to cut it. I also know that she knows her stuff well enough, that the only reason she would get a formal standardized assessment out was if Obsidian was not 'passing' it. When she walked back in holding it, I knew. Obsidian is not currently 'mildly' delayed with gross motor skills.

By the end of the session, PT said as much. He now falls into the 'moderately' delayed gross motor skills. For this reason, she is recommending PT every other week until he 'catches up'. 'Catching up' in Obsidian's world is not truly catching up, but returning to the 'mildly' delayed category. At this point, the PT and I diverged, somewhat philosophically. I strongly feel that a good part of Obsidian's gross motor struggles are from vestibular dysfunction. There are multiple causes of vestibular dysfunction in both children and adults. The cause of the dysfunction effects the therapy. The treatment of children with vestibular dysfunction is not the same as adults. Vestibular therapy is a specialized area for both OT and PT. I know a handful of vestibular PTs, but they all are for adults (and they themselves say they would not be comfortable taking on a child because it is different). There are differences on how OT and PT deal with vestibular dysfunction. Obsidian biggest problems, all fall more into the PT realm. His PT feels it is more of a balance and strength issue. She also recommended a formal OT evaluation. I do feel he would qualify for OT because his fine motor skills are starting to fall behind, but this is more of a fine motor control issue and a strength issue. She was thinking more of sensory integration. Obsidian's problem is not a traditional OT sensory integration disorder problem, but a vestibular (which is part of it, but not in what is currently viewed as a "SI disorder"). We got into a bit of a philosophical discussion whether it would be more appropriate for a PT or an OT to address the vestibular issues, or really even try to formally assess his vestibular problems. Neither of us really know of either an OT or a PT that is a pediatric therapist that specializes in vestibular problems. I feel much more strongly that this is the route that really needs to be explored at this point.

I do agree that his gross motor delays do need to be addressed. So in the meantime of me trying to find an appropriate therapist (I would take either an OT or PT if they are a pediatric vestibular therapist), he is back in therapy, every other week. After I got over the shock of it, I wonder why I was shocked in the first place. I took him in because I noticed him falling more behind. It was the hope that I was being an overreactive parent. The hope I was wrong. I knew I wasn't, but I was holding onto hope more than I knew. I am reminded of the blessing it is to Obsidian. I don't wait until he is so far behind it is obvious to anyone. This way, it is harder on me than it is on him. And that is how I like it.

In the wind

For many women who are stay at home mom's, when their youngest child goes to full day school, is a time of change. And so it is with me. I'm not a person that is afraid of change. Most of the time I don't even avoid change. That said, change without knowing what direction I'm going I do not like. In the current case, I even have a date when the wheels are really going to be set in motion for this change.

Obsidian has his medical issues. On top of that, I know he has a learning disability. From my experience, I'm guessing this learning disability is pretty pronounced. Obsidian in so many ways is my karma. Knowing myself, and knowing Obsidian, it can go a couple of ways. His stubborn streak can be his biggest asset or his biggest roadblock. Last year, his preschool teacher and Obsidian just did not click. Neither of them 'got' the other. I don't even have an opinion of how good of a teacher she is, I was never able to get to that point. The most difficult part of this is that I'm putting the cart before the horse, contemplating how well he is going to do academically. Even making that statement, sounds ridiculous.

However, Obsidian does have medical issues. In a letter his pediatrician wrote to the schools, she said he was 'medically fragile'. It hurt to read those words. Cognitively, I know this statement is true. I manage his medical issue so well, that there are only little hiccups. There have been no hospitalizations, no 'major' events. What I do to manage his medical needs, is far more normal. I constantly monitor how much he is eating and drinking, how hot his environment is, how physically active he is being, and then manipulate the factors so he can function at his best. Last year, he had a lot of behavior problems from when he started school until about November. They virtually disappeared after that point, after Christmas break, the out of control behavior was completely gone. Well, it was gone until the weather started going about 70 degrees. Then the behaviors started again. I'm not talking normal 4 year old behavior, he has those too. The school district is not willing to say that school might be contributing to the behaviors. That going to school in the heat might be part of his problems. A higher up person said to me in a meeting, that it 'just might be my parenting' that are causing his behaviors. The behaviors that for the most part only happen when it is hot and he is going to school.

If his medical issues are not, there will be no chance that he can learn academically. Keeping in mind that there are plenty of academic issues as well. Unless the school can manage him medically, sending him to school is not an option. I've worked with him at academics at home. Homeschooling him will be a tough tough road. There are things Obsidian could really benefit from going to school. Only if he is cared for medically and his teacher realizes his potential and holds him accountable.

Last summer I took a certification class. I passed it, but I don't think it is where I'm going to go. I could start working more hours at my jobs. I could go back to school. I did go back full time winter semester.  I would have to decide my major, in a 'for sure' kind of way. Or the very really real possibility, I could be needed at home with Obsidian. His pediatrician asked me what my plans were for working come the fall. I already had thought about it and knew what my plan is for this fall. I will be staying at home. Waiting to see how school goes for fall, waiting to see if my 'job' continues to mainly be at home or if some of my energy will shift.

Earning your belts

In January 2011, Pyrope and Obsidian started Tae Kwon Do. For very different reasons, Jet and I thought it would be good for them. And it has been. When they first started, I questioned the master that the two of them would be progressing at the same rate. Pyrope is older and is not delayed with his gross motor skills. Obsidian is younger and delayed. He will soon turn 5, and he still can not walk down stairs alternating feet. The only place he can keep up with learning skills is in a pool. TKD is not an aquatic activity. The master assured me that they would continue to be promoted together and this would work out fine.

For the first year and two months, they were promoted together. They got their first new belt in 2 months and after that they got a new belt consistently every 3 months. With a few exceptions, every child in the school is promoted every 3 months. I've never seen a child fail a belt 'promotion test'. After their last promotion test to orange in March, I was called into the Master's office. Bottom line, Obsidian will not be belt tested again until he is 6. Pyrope will continue to be promoted every 3 months.

I do not have a problem with Obsidian taking longer to be promoted. It takes him longer to gain physical skills. I do have a problem with the fact he is used to being promoted with Pyrope, and that promotion coming every 3 months. There will now be a 16 month stretch with no promotion. He will have to watch Pyrope continue with the promotions. He will have to watch his classmates move past him regularly. I also would have less of an issue from a theological point of view if other children were held back as well. There is another boy that is in Obsidian's grade. He is 5 months older than Obsidian and is 'typical' for gaining gross motor skills. However, he does not want to gain skills, does not listen as well, and does not enjoy TKD as much as Obsidian. His mother was told that they were going to hold him back a level while his older brother was promoted (who is born within a couple weeks of Pyrope). She said if they did not give the younger one his belt, she would just order it on the internet and bring him wearing it. He was promoted. This I have issue with on many levels. First, why on earth would the TKD school even consider moving him up even if he was wearing the higher color belt. It takes away from everyone that has EARNED the belt. Second, what is the mom thinking? If your child has not earned the belt, why get it for him? If you do not want to go with the TKD school's program, don't send him there.

I have been discussing regularly, and at times at length, with Obsidian the fact that he will not be getting a green belt when Pyrope does. And that other kids will be 'passing' him. We've talked about how it is his job to do his best and he will be promoted when he is ready. He is verbalized his frustration. He has brought up other kids that are not 6 that are green belts or higher. He has pointed out how some kids do not pay attention or try as hard as he does. How some are not even able to do the forms as well as he is. All true statements. I've watch his attitude and how hard he tries fluctuate in class. The instructors have watched the same. At one point, I thought about complaining about the other children who were also younger that did not have the skills that the older children and adults with the same belt level have being promoted and my son not being promoted. Then came the story of the internet belt. I have a peace about letting my child be held back. When he is promoted, it will be because he has the skill. Waking up in the morning, and in the mornings to come, that is something I can own up to being part of and teach my child it do. To earn his belts.

Changing times

This year, I've felt that there were changes in the air. For me. For my family. Problem being, I just don't know where those changes are going.

I got a new certification. I thought teaching that course was where I was starting to go. But getting it up off the ground is proving to be difficult. Very difficult, for a number of technical reasons. I'm still quietly working on it, but also willing to just let it go.

I went to school full time this past semester. It went well enough. It is much harder to be a SAHM, go to school full time (mainly on line), and work part time than it was to go to school full time and work part time. Way harder.

My hours at my part time job were cut from 20+ a week (if I wanted) to 8 a month. This cut was over 18 months, but the last drop was from 8 a week to 8 a month. This is what lead me back to school.

Jet's health insurance changed. The change was not good for us. It caused a cash flow problem. Well, causes one. It is why I'm not going to school this summer. Jet is looking for a different job for this reason. As long as both of us are functioning, we can make this insurance work. If one of us were out of commission, we would be screwed.

Pyrope has been diagnosed with autism. Not really a surprise, but it still stings to 'officially' get the diagnosis. There have continued to be battles with the school and him. Overall, he is doing much much much better academically. On a day to day, practically speaking way, I still have to be very on top of things to make sure what should be happening at school is. I'm really hoping for not one of the 2nd grade teachers. She is known for being mean to her students and starting fights with their parents. Pyrope does excellent with positive reinforcement, and pretty lousy with being yelled at. I start enough of my own fights with the school without being antagonized to do so. I'm hoping the principal feels the same and just gives Pyrope the 'nice' teacher.

And then there is Obsidian. My karma. The school issues with him have been large. Much more problematic than Pyrope's. This coming year will be all day kindergarten. In the meeting to talk about his transition, I was told the behavior problems I'm having at home are all my fault due to parenting techniques. Never mind the fact, the only time I have these severe behavior issues is when it is over 70 degrees and he has school that day. Also never mind the fact that his doctors say it is related to his medical issues. I have had a sense of it, and his pediatrician warned me, that this coming school year, I might have to keep him at home on either home based instruction or just pulled to homeschool due to his medical problems. Before that conversation with her, I had come to the conclusion I shouldn't go to school or commit to working in the fall for that reason, but I got confirmation. I was sad, so sad to realize that others were seeing the same potential problems I am.

So many days I don't know if I'm coming or going. I know that my day to day life is going to look so different soon. I just have no idea how it is going to look.

Going where?

This summer has taken directions I haven't anticipated.  Relationships have been challenged, multiple times, in multiple ways, most of which I didn't anticipate.

I'm married.  Being married this summer has challenged me.  Really challenged me.  I have a deep peace about it, although it is odd as there are parts that are really bothering me.  Without a lot of reception on the other side of why I find it bothersome.

The first week of June was rough.  Very rough.  Among other problems that were caused that week, my best friend and my relationship was challenged.  Not because of a disagreement between us, but we both had to make decisions that very much changed the relationship and how we socialize.  And really how our kids socialize.  I was going to resign an executive board position.  Best friend advised to not do it in heat of the moment.  So I was giving it 24 hours.  In that 24 hours, she resigned a board position.  Then by the end of the week, left the organization (she was president of this organization less than a month prior to this event).  I was still in.  I decided to stay in for the year.  I was unhappy with how things were going.  I was very unhappy about the fact we were treated as "J and Ruby", not two separate individuals.  I have had to very clearly and repeatedly say "I am Ruby, I am not J.  Please treat me as such."  I'm still frustrated by the organization.  I'm still in to follow through with my commitment.  That same week I got a phone call that Obsidian was very unexpectedly given a position in a preschool.  I had been told come September that they *might* have an open spot, and then screen kids for the spot(s), but nothing before then.  Out of the blue the first week of June, I got a phone call that they changed some policies, and there was an open position, and he got it.  Obsidian and J's younger daughter were going to be in the same preschool, in the same class.  I was going to help with pick up times, as it was not going to go with her older daughter's schedule perfectly.  So I was leaving her behind.  On Monday morning of that week, we thought we were doing a lot of things together.  A lot.  By the end of the week, she had left an organization that I choose to remain in, and I left a school she choose to remain in.

I like planning out trips, and generally do so fairly far in advance.  I planned a trip to a near by lake.  Nothing special about it.  I (with Jet's agreement) invited my mother for the week.  My siblings were supposed to come.  I changed some of the dates so they could come.  They didn't.  However, the vacation was just about perfect.  We went to the beach.  We ate.  We hung out at the house.  My mom got to know my kids in a way she typically doesn't.  We did a 2000 piece jigsaw puzzle.  It was relaxing.  We were going to go on an adventure or two, but lacked the motivation to do so.  Which is fine.  We really all had a great time.

And then my cousin asked if we wanted to go to the beach in North Carolina a couple weeks after I paid for first vacation.  So a month after first vacation, we did another vacation.  In some ways a great vacation, in others, so-so.  Most of my siblings did make it for that one.  However, my one brother who was supposed to be there the whole time, was only there for 2 days.  And he brought his girlfriend (which was actually fun, she was so enamored with the ocean, it was fun to watch her and my brother).  My brother, who has a wife and 2.5 year old, kept saying they were not coming.  Less than 12 hours before we were leaving, I get a text from my aunt, who is on the road to get there that we are sharing a house with, to call my brother and figure out how many air mattresses we need.  To quote my reply text to her "Um. Okay."  My sister did not speak much to me the whole trip.  She didn't speak a lot to anyone.  I thought it would be a lot of 'family time'.  Not so much.  The other house (my cousins and their families), always were going out and doing things.  My immediate family is happy playing in the ocean, eating, lounging, playing in the ocean, walking the beach, and eating some more.  My brother with the 2 year old, never put said child to bed before 10 (frequently later, and typically after he had been screaming for a while).  My kids were always out cold by 8.  My kids and I had breakfast, swam in the ocean, played in the beach, and were coming back to eat while nephew was sitting at the table working on breakfast.  They would be at the beach, or having an adventure, when I had my kids quiet/nap time in the afternoon (trust me my kids need that or they are screaming demons later).  Pyrope in particular LOVED the ocean.  Obsidian was very impressed with watching the baby sea turtles make their way to the ocean.  But it was not what I expected.

I took the kids to DC, on a short notice trip.  Jet did not come.  We met with a friend.  I've been surprised from the criticism I've received from this trip.  From different people, for various reasons.  It was a good trip.  I enjoyed it.  My kids enjoyed it.  I think the other person enjoyed it.  I don't get why other people have such strong opinions of it.  Given the opportunity, I'll do it again.  It was fun.

Then my certification class.  I have never had any intention of starting my own business/company/nonprofit or anything like that.  Not a desire of mine.  Not even a remote desire of mine.  Something I've said I would not do.  Yeah, about statements like that.  I am now certified to teach a class that I feel really has a lot to offer my community.  However, there is no group or company in the area that runs this class in a sustainable manner.  So I'm taking it on.  I'm so very overwhelmed by it at this point.  I am trying to break it down to achievable, doable parts.  My goal is to teach my first class by the end of the year and have other classes set up to teach in the new year.  Next year, it is my goal to get more of a framework for a nonprofit to support the ongoing needs of running the program.  With the hope to expand to other target audiences in the future.  Hopefully a 5 year future.  J is planning on joining in on this after I get it more off of the ground.  She says she will help get it off of the ground, but it is mainly me.  And I know that.  And she knows that.  And really, personality wise, you would think it would be the opposite for starting this.

So here it is, a week before the school year begins, and I have lots of hopes, dreams, plans, and many uncertainties for the year.  Bring it on.