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...
Sunday, July 28, 2013
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.
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