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.
Wednesday, August 21, 2013
Sunday, August 4, 2013
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.
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.
Sunday, July 28, 2013
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...
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...
Wednesday, July 17, 2013
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.
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.
Tuesday, July 9, 2013
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.
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.
Monday, June 10, 2013
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.
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.
Monday, May 27, 2013
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.
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.
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