Okay, so I am really tired today--it has been one long week....
So there was an insurance glitch and so A did NOT go into rehab on Monday and was at my dinner table Monday night (and Tuesday and Wednesday night...) But thankfully the insurance glitch got straightened out and A left for rehab yesterday and has started the journey towards a new or renewed life. I will have to figure out when I can clean out A's apartment and arrange to move all of A's furniture into storage (in my garage)
The carpet is down in the daycare area of the house as of Wednesday--YAY!!! it has been professional cleaned and has dried, thus ready for the room to be set up as of today. I have been getting the base boards together and need to cut a few to fit, so hopefully tonight I will have the big room's baseboards done after work. And today will be the last day of babysitting outside of my home, as this weekend I should be able to get the daycare area all set up and ready to roll, so the two kids I currently babysit can come here and play. AND I will hopefully be able to be ready for upcoming inspections in the day care licensing process, which will allow me to more than 2 children in addition to my own. You can watch up to two children at any given time in NYS without a license, but need a license to watch more--the license I am applying for will allow me to watch up to 6 kids in addition to my own. If demand is great, I will hire on a co-worker and apply for group family licensing, which allows up to 12 children with two adults. For now I will start with the smaller one, as that is what I have been working on, and I will have a licensed alternate provider and a couple of approved substitutes who will be able to take over if I am running around to appointments with my kids.
Yesterday was a crazy day as Josiah had his Neuropsychological evaluation, which was an hour and a half away, and took 6 hours (9:30am-3:30pm). He spent most of that time working with the psychologist solo, while I had my own forms and paperwork to fill out in the waiting room. He did very well and worked very cooperatively with her. She really was a wonderful person, and made both Josiah and I feel very at ease and comfortable. A genuine, kind human being--so she was very easy to like and Josiah took a liking to her right away. That made things much much easier. So I am hoping that the information that she was able to get yesterday combined with the information I had provider earlier, and the information from the school, as well as her observations from the day she came to observe him at school, will help be enough for her to determine what is going on with him and how best to help him with the behavioral and emotional issues that have been developing and worsening over the past year. I am putting a great deal of hope into Dr. McCabe's lovely hands.
Coming up next week--Josiah sees his pulmonary doctor, Gonzo sees his allergist (on different day, both of whom are nearly 2 hours away--the joys of specialist), and at Josiah's school it is heritage week, so many various activities including a trip to the museum, which I need to figure out a Way to attend or else he can not go. Actually, he really just needs a family member to go with him, so maybe I can ask my father or my nephew Jess--Can you believe it, my little Jessi is 18 years old!! and heading off to college in the Fall!! WOW time flies--and I feel old, I was an adult (19) when Jessi was born and now he is an adult--just amazing to me some days.
I will post later about how the eating life style change is going--lets just say for now that changing habits is a challenging thing, and it takes 21 days to establish a new habit, so it has to be conscious effort during those 21 days to embrace the new lifestyle habit, after that it gets easier. Eventually it becomes second nature an you don't even have to think about it. I need to get more sleep on a regular basis, I think that would go a LONG way to helping me maintain the focus and will to change habits a bit more successfully--I have not given up, just have had a couple of days where old habits have superseded fledgling new habits, but that is for another post later....
Showing posts with label Josiah. Show all posts
Showing posts with label Josiah. Show all posts
Friday, June 8, 2012
Saturday, May 19, 2012
Quite a week (lots of pictures--but not of the house)
Okay, so ....
I know I say that a LOT--I never realized how much I actually say that vocally until about a year ago my son was saying it all the time, and I was like, "where did he get that from" and then I heard myself saying it one day. Then I realized that he got it from ME. So ever since then, I have allowed myself to do it in writing because really it is how I talk...
Anyway, so I got the boys all moved in on Sunday of last week; they both slept in Josiah's room until we could get Gonzo's carpet down. His carpet went down Monday and was steam cleaned, so Tuesday evening we set up his bed and dresser. Then I was able to clear out my room, and then Wednesday morning my room was steam cleaned, and I let it dry for two days because it had a LOT of stuff on it (being the only carpet that went through the whole construction, as the others are being put down now) and so it had to be extra cleaned, and thus took longer to dry. It still smells a little funny, but I am happy to be sleeping in a big bed again, as I was sleeping in a twin bed since we left the apartment 2 months ago.
Other than that, it has been plugging away at cleaning, putting things away and moving things around to prepare to put down the rugs in the day care/family room and dining room (but all of our boxes and such from the apartment were stored there so it is a lot of moving and sorting and restoring in the garage area. There is still quite a bit to do, but it is mostly small things that can be fit in here and there.
In addition to the house, Josiah had his elementary Spring concert, and he had some speaking lines--which he did amazingly--he is such a ham, loves being the center of attention, so he really plays it up. He, and all the kids did a great job singing and saying their lines. I would post pictures, but alas none of my pictures or video came out well, except the ones I took of Gonzo at the back of the gym when he couldn't sit still while the older elementary performance was on. SO we toured the kids art work displays in the back during that time. I did get a couple of pictures of Josiah that came out as I was picking him up in the hall after the concert was over.
On Thursday, Josiah had his weekly swim time in the evening, and we had an appointment earlier than that with the family therapist. So in the time we had in between, we went grocery shopping. While we were there we ran into Josiah's PT that he had had when he was 3. It was really great to see her, and I am hoping we can catch up with her soon to hear how things are going. After grocery shopping, there was still an hour before swim time, so I decided he and I needed hair cuts, and we went to our favorite place (Adonis Hair Salon) and were able to snag Brenda, our favorite. She did a great job on my hair, but Josiah refused to get a hair cut. He sat very nicely and watched me get my hair cut. Usually he can be talked into it, but that day he was not having anything to do with it. So then we went to swim and he did a GREAT job of listening, swimming, and working hard for the whole time. I got some pictures, as I realized that he has been swimming for over 2 years and I had never taken any pictures of it before. So here are a couple of my swimming man at aquatic PT.
Here is Josiah after swim on the way to the car, telling me that he needs to take a picture
I know I say that a LOT--I never realized how much I actually say that vocally until about a year ago my son was saying it all the time, and I was like, "where did he get that from" and then I heard myself saying it one day. Then I realized that he got it from ME. So ever since then, I have allowed myself to do it in writing because really it is how I talk...
Anyway, so I got the boys all moved in on Sunday of last week; they both slept in Josiah's room until we could get Gonzo's carpet down. His carpet went down Monday and was steam cleaned, so Tuesday evening we set up his bed and dresser. Then I was able to clear out my room, and then Wednesday morning my room was steam cleaned, and I let it dry for two days because it had a LOT of stuff on it (being the only carpet that went through the whole construction, as the others are being put down now) and so it had to be extra cleaned, and thus took longer to dry. It still smells a little funny, but I am happy to be sleeping in a big bed again, as I was sleeping in a twin bed since we left the apartment 2 months ago.
Other than that, it has been plugging away at cleaning, putting things away and moving things around to prepare to put down the rugs in the day care/family room and dining room (but all of our boxes and such from the apartment were stored there so it is a lot of moving and sorting and restoring in the garage area. There is still quite a bit to do, but it is mostly small things that can be fit in here and there.
In addition to the house, Josiah had his elementary Spring concert, and he had some speaking lines--which he did amazingly--he is such a ham, loves being the center of attention, so he really plays it up. He, and all the kids did a great job singing and saying their lines. I would post pictures, but alas none of my pictures or video came out well, except the ones I took of Gonzo at the back of the gym when he couldn't sit still while the older elementary performance was on. SO we toured the kids art work displays in the back during that time. I did get a couple of pictures of Josiah that came out as I was picking him up in the hall after the concert was over. 
On Thursday, Josiah had his weekly swim time in the evening, and we had an appointment earlier than that with the family therapist. So in the time we had in between, we went grocery shopping. While we were there we ran into Josiah's PT that he had had when he was 3. It was really great to see her, and I am hoping we can catch up with her soon to hear how things are going. After grocery shopping, there was still an hour before swim time, so I decided he and I needed hair cuts, and we went to our favorite place (Adonis Hair Salon) and were able to snag Brenda, our favorite. She did a great job on my hair, but Josiah refused to get a hair cut. He sat very nicely and watched me get my hair cut. Usually he can be talked into it, but that day he was not having anything to do with it. So then we went to swim and he did a GREAT job of listening, swimming, and working hard for the whole time. I got some pictures, as I realized that he has been swimming for over 2 years and I had never taken any pictures of it before. So here are a couple of my swimming man at aquatic PT.
Here is Josiah after swim on the way to the car, telling me that he needs to take a picture
And here is a picture of me with my new haircut that Josiah took when I gave him the cell phone--of course this is after sitting in a humid 95 degree pool room watching him swim for over half an hour, so the style had slipped some with the heat and humidity. Still a really good picture for a 5 year old with a cell phone, I thought. And a nice haircut for me.
Thursday, May 3, 2012
Busy day ahead....
So....today is a very busy day. I have to to babysit for an hour this morning, and after I drop my little charge off for her preschool program at the Arts Center, I have to head down to a nearby school. I am meeting our school's guidance counselor, who is also the CSE chairperson, there to look at one of their programs. Then we head on to another two schools to look at their programs--one being at Prospect, the school where he did preschool and still does aquatic PT. We are all still up in the air about what will be the best setting for Josiah for next year, as this year has had so many ups and downs and all around.
After visiting three different schools and reviewing their programs, then I have an appointment with our family therapist (just me today), which will be good as life has been so busy that I have not had a chance to see her and update her as to what is going on in the family for a few weeks. It will be good to also talk about a variety of things going on with our family, with myself, and with the boys.
After that, I have to head back home (an hour away), pick up Josiah and go back down to Prospect (an hour away) for his weekly Aquatic Physical Therapy time.
So today is a lot of running, running running....I just hope it is productive and useful, as I could really sue a productive day. The last couple of days, even though I have worked on the house in the evening, have been two steps forward, two steps back kind of days. I had thought the plumbing was done and we just needed to hook in the fixtures--but alas, after relaying the bathroom floor with new adhesive (the self sticky tiles did not stick---go figure), I had hooked up the bathroom sink, which worked beautifully--until I shut the faucet off and for some reason the pipe in the wall decided to start leaking. So I had to shut off that water to the sink and shower part of the bathroom (the other half is still not hooked up...). Then I finally got a brand new faucet for the kitchen, as the other ones I had both had problems (used stuff can be great or can be a headache), I got that all installed (on my own like the bathroom sink), and after I turned it on, it also worked well. But I woke up this morning to there being water all over the kitchen floors, seeping under the wall. The sink faucet is not leaking, which means a pipe in the wall as sprung a leak....
So two steps forward, two steps back....
And I am feeling blue and lonely and a bunch of other things in addition to the crazy running around I have to do today, so that compounds the issues of the day. I hate blah feeling days....
After visiting three different schools and reviewing their programs, then I have an appointment with our family therapist (just me today), which will be good as life has been so busy that I have not had a chance to see her and update her as to what is going on in the family for a few weeks. It will be good to also talk about a variety of things going on with our family, with myself, and with the boys.
After that, I have to head back home (an hour away), pick up Josiah and go back down to Prospect (an hour away) for his weekly Aquatic Physical Therapy time.
So today is a lot of running, running running....I just hope it is productive and useful, as I could really sue a productive day. The last couple of days, even though I have worked on the house in the evening, have been two steps forward, two steps back kind of days. I had thought the plumbing was done and we just needed to hook in the fixtures--but alas, after relaying the bathroom floor with new adhesive (the self sticky tiles did not stick---go figure), I had hooked up the bathroom sink, which worked beautifully--until I shut the faucet off and for some reason the pipe in the wall decided to start leaking. So I had to shut off that water to the sink and shower part of the bathroom (the other half is still not hooked up...). Then I finally got a brand new faucet for the kitchen, as the other ones I had both had problems (used stuff can be great or can be a headache), I got that all installed (on my own like the bathroom sink), and after I turned it on, it also worked well. But I woke up this morning to there being water all over the kitchen floors, seeping under the wall. The sink faucet is not leaking, which means a pipe in the wall as sprung a leak....
So two steps forward, two steps back....
And I am feeling blue and lonely and a bunch of other things in addition to the crazy running around I have to do today, so that compounds the issues of the day. I hate blah feeling days....
Monday, April 9, 2012
Slow and steady.....(is making me crazy) wins the race......
Well, this has been a long hiatus from blogging.... So what has been keeping me so busy—well….many many things—some that make sense and others that are more subtle or less easily understood.
So the house is still a work in progress. We moved out of the apartment on March 14th and the kids moved into A’s apartment. They have been doing well, though Josiah asks every day when we are going to move into the new house. Progress has been slow but steady on the house. The electric is done as of yesterday and we are waiting for the electrical inspection now, which will hopefully be early this week. The plumbing should be done in the next day or two, barring any unforeseen issues. That will be two huge issues out of the way. Once the electrical inspection is cleared, we can put the other half of the walls on and finish the place. I am glad that the light at the end of the tunnel might be getting closer. I would love to predict that we will be done by the end of April and able to get the final inspection and clearance to move in by then, that is my hope. But this project has reminded me to not expect anything specific and just to roll with what comes—hope for the best but don’t get so set on how it has to play out and in what time frame. In the end it will be worth it, and that outcome is what I need to focus on, not trying to figure out how each little step is supposed to go.
The kids are doing well, for the most part. They have both had ups and downs, Gonzo is choosing to bite Josiah at least once every day—and even when I am vigilant about separating them when they are not playing well together, he has now taken to just biting him at random times, just for the heck of it, as he realized if I know that there is a problem, I will be proactive. Both of them have had ups and downs at school. We are looking into possible other programs for Josiah for next year. I will write about hat another time. We are also getting an evaluation with a neuro-psychologist for Josiah. I think that will be a good thing, it might give us a better idea of what on earth is going on with him, as his behavior and his super quick mood changes are way beyond what I can understand at this point. All of my theories have fizzled out, and his outbursts are really interfering with his ability to advance and grow in a healthy and successful way. He has gotten into such negative behavioral patterns and nothing I have tried is working to help him move beyond it. So hopefully the neuropsychologist will have be able to shed some light on what is going on with him.
I have been babysitting full time now, as the little ones that I watch have had a schedule change, and their mom took a full time job. So I no longer have a break in the middle of the day, which has slowed my ability to work on the house. I also have my kids after school and most day until bedtime at A’s house. Some days A cooks dinner, but I put them to bed every night. This means that I don’t have much time in the evenings to work on the house. So it has meant that almost all of the work aside from weekends and little things that I can do in the evenings, has fallen to my father to work on. I have been trying to get the spackle and sanding done on the walls that are up in preparation of painting. I am so looking forward to the final stage and the finished house. This initial phase from Laundromat to house has been such a process. I look forward to moving in and moving on the preparation for the daycare phase. There has been a lot of interest in when the day care will open and how much I will charge. I am hoping to have some answers to those questions.
So that is where things are in a nutshell. There are a few other things going on—but they are not really things I want to talk about on the blog. For now I am just trying to take it day by day, as I have been getting oscillating between overly anxious and somewhat depressed as this process has dragged on so much. So I am just trying to keep a positive and realistic focus and not get too stuck on expectations of when and how things should be going or how I want them to go. Trying to remember that it is what it is, and it takes as long as it takes, and roll with whatever happens. Not always easy, but it is what I am trying to do….. I hope to write again later this week, hopefully with an update about the inspections…. That would be great….
So the house is still a work in progress. We moved out of the apartment on March 14th and the kids moved into A’s apartment. They have been doing well, though Josiah asks every day when we are going to move into the new house. Progress has been slow but steady on the house. The electric is done as of yesterday and we are waiting for the electrical inspection now, which will hopefully be early this week. The plumbing should be done in the next day or two, barring any unforeseen issues. That will be two huge issues out of the way. Once the electrical inspection is cleared, we can put the other half of the walls on and finish the place. I am glad that the light at the end of the tunnel might be getting closer. I would love to predict that we will be done by the end of April and able to get the final inspection and clearance to move in by then, that is my hope. But this project has reminded me to not expect anything specific and just to roll with what comes—hope for the best but don’t get so set on how it has to play out and in what time frame. In the end it will be worth it, and that outcome is what I need to focus on, not trying to figure out how each little step is supposed to go.
The kids are doing well, for the most part. They have both had ups and downs, Gonzo is choosing to bite Josiah at least once every day—and even when I am vigilant about separating them when they are not playing well together, he has now taken to just biting him at random times, just for the heck of it, as he realized if I know that there is a problem, I will be proactive. Both of them have had ups and downs at school. We are looking into possible other programs for Josiah for next year. I will write about hat another time. We are also getting an evaluation with a neuro-psychologist for Josiah. I think that will be a good thing, it might give us a better idea of what on earth is going on with him, as his behavior and his super quick mood changes are way beyond what I can understand at this point. All of my theories have fizzled out, and his outbursts are really interfering with his ability to advance and grow in a healthy and successful way. He has gotten into such negative behavioral patterns and nothing I have tried is working to help him move beyond it. So hopefully the neuropsychologist will have be able to shed some light on what is going on with him.
I have been babysitting full time now, as the little ones that I watch have had a schedule change, and their mom took a full time job. So I no longer have a break in the middle of the day, which has slowed my ability to work on the house. I also have my kids after school and most day until bedtime at A’s house. Some days A cooks dinner, but I put them to bed every night. This means that I don’t have much time in the evenings to work on the house. So it has meant that almost all of the work aside from weekends and little things that I can do in the evenings, has fallen to my father to work on. I have been trying to get the spackle and sanding done on the walls that are up in preparation of painting. I am so looking forward to the final stage and the finished house. This initial phase from Laundromat to house has been such a process. I look forward to moving in and moving on the preparation for the daycare phase. There has been a lot of interest in when the day care will open and how much I will charge. I am hoping to have some answers to those questions.
So that is where things are in a nutshell. There are a few other things going on—but they are not really things I want to talk about on the blog. For now I am just trying to take it day by day, as I have been getting oscillating between overly anxious and somewhat depressed as this process has dragged on so much. So I am just trying to keep a positive and realistic focus and not get too stuck on expectations of when and how things should be going or how I want them to go. Trying to remember that it is what it is, and it takes as long as it takes, and roll with whatever happens. Not always easy, but it is what I am trying to do….. I hope to write again later this week, hopefully with an update about the inspections…. That would be great….
Wednesday, March 28, 2012
lllife iiiiiiiiiiiis buuuuuuuuuuuuuuusy
I have actually tried to write a few different posts, but either run out of time or out of emotional energy to write them....
Yes, blogging sometimes takes a lot of emotional energy, mainly because life takes a lot of emotional energy and transformation takes a lot of emotional energy, and my life right now just takes a lot energy in ALL areas...I have such a headache.
So, quick update on various areas:
The renovations on the house--ugh... yeah, I won't go into details...suffice to say that everyday we get a little closer and a little closer to the finish line...I hope to have more news later on---OH wait! I do have some good news, instead of having to build kitchen cabinets and create a kitchen from scratch, about 2 weeks ago I was given a used kitchen--cabinets, counter tops, dishwasher, stove.... What a huge blessing it was. So there was a reason why the kitchen had not yet been worked on. We had to redesign the central part of the house, changing the layout of kitchen and dining room in order to be able to use this great kitchen. And in the end I like this design better. So the kitchen is almost plumbed (it would have been finished being plumbed today if I had not needed to take a break and give my dad a break, so that I could catch up on emails and phone calls that I have been neglecting for the past 3 weeks. And so i could take a deep breath and just focus on other areas of my life that need tending for the day. So I have taken my break today to be online and try to blog, before I have to go back to work at 2pm...
School for Josiah---ups and downs, still trying to figure out what is going on with him. I don't remember if I have posted about our chemical imbalance thoughts and such, if not I'll do that at a later time. Something is just not working for him there, and it does not seem to be working for them. I am convinced it is a combination of factors. But that still does not give me any more insight into the best course of action to take. We have a little time, we will be looking at other programs with the CSE chair---I feel kinda lost on this whole education plan thing for him. I thought Gonzo's issues were complicated and challenging. in many ways, he was a piece of cake compared to Josiah because Gonzo's issues, as challenging as they are, are consistent and somewhat predictable. Josiah is not...
There is more I want to say about other things, but I need to get ready to go back to work....starting next week, it will be full time, so no split shift, no more break in the middle of the day. But that means a higher income too....
I'll blog again soon....
Yes, blogging sometimes takes a lot of emotional energy, mainly because life takes a lot of emotional energy and transformation takes a lot of emotional energy, and my life right now just takes a lot energy in ALL areas...I have such a headache.
So, quick update on various areas:
The renovations on the house--ugh... yeah, I won't go into details...suffice to say that everyday we get a little closer and a little closer to the finish line...I hope to have more news later on---OH wait! I do have some good news, instead of having to build kitchen cabinets and create a kitchen from scratch, about 2 weeks ago I was given a used kitchen--cabinets, counter tops, dishwasher, stove.... What a huge blessing it was. So there was a reason why the kitchen had not yet been worked on. We had to redesign the central part of the house, changing the layout of kitchen and dining room in order to be able to use this great kitchen. And in the end I like this design better. So the kitchen is almost plumbed (it would have been finished being plumbed today if I had not needed to take a break and give my dad a break, so that I could catch up on emails and phone calls that I have been neglecting for the past 3 weeks. And so i could take a deep breath and just focus on other areas of my life that need tending for the day. So I have taken my break today to be online and try to blog, before I have to go back to work at 2pm...
School for Josiah---ups and downs, still trying to figure out what is going on with him. I don't remember if I have posted about our chemical imbalance thoughts and such, if not I'll do that at a later time. Something is just not working for him there, and it does not seem to be working for them. I am convinced it is a combination of factors. But that still does not give me any more insight into the best course of action to take. We have a little time, we will be looking at other programs with the CSE chair---I feel kinda lost on this whole education plan thing for him. I thought Gonzo's issues were complicated and challenging. in many ways, he was a piece of cake compared to Josiah because Gonzo's issues, as challenging as they are, are consistent and somewhat predictable. Josiah is not...
There is more I want to say about other things, but I need to get ready to go back to work....starting next week, it will be full time, so no split shift, no more break in the middle of the day. But that means a higher income too....
I'll blog again soon....
Saturday, March 10, 2012
Packing....planning..... and birthday boy
Okay, so this weekend will be taken up with packing and moving most of our things down to the new house. The new house is not done, though we are getting closer and closer. As it stands I have to be out of our apartment by March 15th, which is Thursday, as the landlord has rented it, so I can not extend it any further. The kids will go and stay with A for probably about a week or so, and I will stay at my father's house while we work on finishing the new house. What a huge job this has been.
I finally took some pictures of the progress, though I do not have a before picture. Here are a few shots of the house in renovation:
These were actually taken about 2 weeks ago, but I just now uploaded them to the computer. Much has been done, though most of the work of renovation and construction is not easily visible, as plumbing and electric, insulation and other very important and time consuming things, tend not to have the "wow" effect of things like new walls going up, or paint or carpet. We are nearing the "wow" phase, when the work will be very visible, and as it gets completed, things will actually be in the final stages.
But this week also held Gonzo's 9th birthday!!!
I finally took some pictures of the progress, though I do not have a before picture. Here are a few shots of the house in renovation:
These were actually taken about 2 weeks ago, but I just now uploaded them to the computer. Much has been done, though most of the work of renovation and construction is not easily visible, as plumbing and electric, insulation and other very important and time consuming things, tend not to have the "wow" effect of things like new walls going up, or paint or carpet. We are nearing the "wow" phase, when the work will be very visible, and as it gets completed, things will actually be in the final stages.
But this week also held Gonzo's 9th birthday!!!
I will do a post soon about this amazing little man, who for the first time in his school career, has the right supports, with the right teachers, with the right focus, and because everything is finally in the right places, HE IS DOING GREAT AT SCHOOL!!!! It took a while, and a lot of trial and error, but finally he is having a successful and positive school experience, and can now learn and grow, and have all the wonderful experiences that school has to offer. I am hoping it takes us less time to reach this point with Josiah, but I know it is possible. Looking back at Gonzo in Kindergarten reminds me that Josiah's school start has been easier than Gonzo's was, and I know it will all come together, eventually. I just have to keep advocating for his needs, countering non-productive attitudes, insisting on appropriate treatment and understanding of his issues, and being open to trying new things. Gonzo has been a shining example this year of how amazingly a child can shift when given the right level of supports. This amazing 9 year old (9!) overcomes many challenges, and many horrors in his past, and after having been with us for 6 years, is starting to finally thrive. I am very proud of my son. And I will write more later on him and his amazingness....(I know it is not a word, but it is fun to say, and should be a word...)
Monday, March 5, 2012
reflecting on comment....
So, i received an interesting comment about my last post from someone who decided to be anonymous. The poster who was too fearful to even write their name said that essentially that I hate school and have poisoned my children against it (which must be why we spend time every night finding the three things we like best about school, and what they are looking forward to at school tomorrow--yeah, I really am trying to poison my children against school...(rolls eyes...sigh...)). Which I find interesting, given that most of the last post discussed the benefits of homeschooling against the benefits of public school education--and the reasons that I DID NOT want to pull my son out of public school. Because of the BENEFITS that school offers. Just because I believe that certain aspects of education are better fulfilled in other ways, and because certain aspects of the institution of school bother me, does not mean I hate school. If I truly hated school and saw no beneficial reason for sending my children, they would have been home schooled long ago. Which tells me that the person (unless they are just a troll trying to create discord and hurt in an already painful and difficult situation, in which case I stick my tongue out at you and pray that you get a life worth living) has not truly read my posts about Josiah's schooling, or understood the many many things I have said about my beliefs about school or what I want for my children. As I do not hate school--there are things I hate ABOUT school, there are certain people associated with the school that I do NOT like, but as a whole, if the placement and supports are correct, then school can be a VERY positive and beneficial experience.
As any of my readers know, there have been many posts about the challenges that my son is facing at school, and I have talked at length about my feelings about how the school handles some things well and how they do not. I have talked at length about my feelings about the basic structure of the public school system as a whole and how it is not ideal for the complete well rounded development of children. I have also stated many times why it is beneficial and an important part of the childhood experience in this culture. I have talked about my feelings on home school, and why I feel it is important for my kids to BE IN SCHOOL. Even the public school system know and requires only 2 hours of one-on-one instruction in lieu of a 6-7 hour school day, as the shorter, more individual education takes far less time to accomplish more academics. That is because, part of a child's education at school has nothing at all to do with academics--it has much, much more to do with social and cultural molding. And that is very important. Most people who remove their children from public education do so because of they do not agree with the social and cultural molding their children are getting. I am not a huge fan of it myself, as I believe it is an outdated motif, left from from an industrial, assembly line mentality era, when it was important to get children accustomed to the industrial life view and living model. Our world has change to a post-industrial era, and creativity, individuality, and numerous other social and cultural traits are more valuable than industrial modality, but it is taking the school model longer to change than the culture as a whole.
I have spent more energy (physical, emotional, & cognitive) dealing with school related issues in the past four years than i have in dealing with ALL of the other issues the boys have combined, which if you know anything at all about my boys and their special needs, you will have some understanding go how much time and energy goes into managing their needs aside from school and aside from them just being kids. The main reason for that is that public school is not in any way designed to handle kids who do not fit into basic molds. And we, as a society and a culture, have learned that people have value (did you know that anonymous commenter) and can contribute to society as a whole, as well as live fruitful lives from an individual perspective, if all people are treated like people and given the opportunity to have a family, to have an education, to have social interaction, to be out in public--unlike the 1950's idea that all people who do not fit the right molds need to be locked away, and neglected, and allowed to die or languish is some state akin to death, rather than given then chance to reach their potential. Thar means that those who would have been locked away before, are now being included in life and society as they should be. BUT it also means that people have to be flexible, and be able to learn and be able to adapt and change, and be open minded--they need to think outside the box, and be ready fro trial and error, be ready to have unexpected reactions, and be willing to lose the cookie cutter children idea. It means that those with special needs, have special needs--needs that are different from the needs of the average person. it means that something that worked well for me or you or joe schmo down the street, may or may not work well for them. If their needs did not differ significantly from the average person--they WOULD NOT HAVE SPECIAL NEEDS!!!
It means that as a parent I have to be more flexible in my expectation, my desired for my own life, and my dreams for the future both for myself and my children. It means that the doctors have to be willing to gain knowledge about their various medical issues which make treatment different for them in some areas. it means that teachers need to be open to learning other styles of teaching and dealing with a child whose needs and abilities are different. It means that people need to stop assuming they have it all figured out, and be flexible, wiling to change, and grow and learn--not just once but everyday.
So, dear troll, it also means that as a parent, I need to work as hard as I can to find what works and what does not for my child. That in order for him to reach his fullest potential, have stability, develop appropriate social behaviors, and become a fully independent adult in another 15 years, I need to respond appropriately to his needs, and be his advocate to ensure that those environments and areas(medical, educational, psychosocial, developmental, and social) that are part of his life and vital to his growth and maturation, are appropriate and are helping rather than hurting his ability to become an independent adult. My job is not to ensure that he is always happy or have everything that he wants, my job is not to make the lives of those who know him easier and to pity them for their having to work with a child with challenges, my job is not to make excuses fro his behavior or to ignore his needs and try to force him to be "normal" (we all can see how easy to is to say to the child "get up and walk like a real kid" and when he does not to blame him for his insolence, or blame his parent fro carrying him--forget the fact that he has cerebral palsy and can even stand with out support--if that is ridiculous, why would you think that other special needs are less debilitating or more deliberate?).
My job and my passion to to help make the world a place where all people --ALL PEOPLE (even the comment trolls)--can be accepted for who they are, for the amazing things that they CAN do, for the unique ways that they can contribute to the growth and evolution of humanity, and for the blessing they can bring to all that they meet. And I know that I will meet many people (have already) that do not understand. People that can not see past their own personal experience to recognize that there are different kinds of people in the world and ALL have value. There are people who do not understand how you can be upset about something going on with a particular situation without hating the whole situation. People who do not get that just because something is less than ideal, that it is okay to express your thoughts about that less ideal issue without having to write off the whole institution. So, I hope that the commenter will have the courage and the respect to step forward and discuss their reflections openly and with thoughtful respect. And will remember that all of us get frustrated sometimes, and there is nothing wrong with being frustrated. God knows my son's teachers get frustrated, and struggle with how to be approach the situation, but sometimes it is overwhelming--and it is okay to feel overwhelmed, it is okay to need to walk away, it is okay to vent and to rant---and it is okay to then come full circle and be ready to step in again and try to work towards a solution. God knows we all hit different parts of that circle at different times...even in the same day.
So i will continue to work with the school personnel, with the teachers, with the therapist, with the doctors, with my son and with myself regarding ongoing issues at school. I will continue to vent when I need to, reflect on things when I need to ,work out my thoughts and feelings, work through new information, and be open to expressing all of it in a public forum--because I know that I am not alone in these challenges, I am not alone in these frustrations, I am not alone in these joys, I am not alone in these blessings---and even the trolls are there to remind me why I blog, why I think out loud (in writing even) and why i am NOT afraid to openly express my feelings in a public forum. There are others out there who need to know they are not alone in their experiences. There are those who like to hear how ideas and thought processes are moving so that they can use some of it for their situation. And there are those like the anonymous commenter, who need to express their own frustration, and remind me that what we think someone is saying is not always what they are saying. inference and implications may be completely different...and it is okay---each person lives their own life their own way.
As any of my readers know, there have been many posts about the challenges that my son is facing at school, and I have talked at length about my feelings about how the school handles some things well and how they do not. I have talked at length about my feelings about the basic structure of the public school system as a whole and how it is not ideal for the complete well rounded development of children. I have also stated many times why it is beneficial and an important part of the childhood experience in this culture. I have talked about my feelings on home school, and why I feel it is important for my kids to BE IN SCHOOL. Even the public school system know and requires only 2 hours of one-on-one instruction in lieu of a 6-7 hour school day, as the shorter, more individual education takes far less time to accomplish more academics. That is because, part of a child's education at school has nothing at all to do with academics--it has much, much more to do with social and cultural molding. And that is very important. Most people who remove their children from public education do so because of they do not agree with the social and cultural molding their children are getting. I am not a huge fan of it myself, as I believe it is an outdated motif, left from from an industrial, assembly line mentality era, when it was important to get children accustomed to the industrial life view and living model. Our world has change to a post-industrial era, and creativity, individuality, and numerous other social and cultural traits are more valuable than industrial modality, but it is taking the school model longer to change than the culture as a whole.
I have spent more energy (physical, emotional, & cognitive) dealing with school related issues in the past four years than i have in dealing with ALL of the other issues the boys have combined, which if you know anything at all about my boys and their special needs, you will have some understanding go how much time and energy goes into managing their needs aside from school and aside from them just being kids. The main reason for that is that public school is not in any way designed to handle kids who do not fit into basic molds. And we, as a society and a culture, have learned that people have value (did you know that anonymous commenter) and can contribute to society as a whole, as well as live fruitful lives from an individual perspective, if all people are treated like people and given the opportunity to have a family, to have an education, to have social interaction, to be out in public--unlike the 1950's idea that all people who do not fit the right molds need to be locked away, and neglected, and allowed to die or languish is some state akin to death, rather than given then chance to reach their potential. Thar means that those who would have been locked away before, are now being included in life and society as they should be. BUT it also means that people have to be flexible, and be able to learn and be able to adapt and change, and be open minded--they need to think outside the box, and be ready fro trial and error, be ready to have unexpected reactions, and be willing to lose the cookie cutter children idea. It means that those with special needs, have special needs--needs that are different from the needs of the average person. it means that something that worked well for me or you or joe schmo down the street, may or may not work well for them. If their needs did not differ significantly from the average person--they WOULD NOT HAVE SPECIAL NEEDS!!!
It means that as a parent I have to be more flexible in my expectation, my desired for my own life, and my dreams for the future both for myself and my children. It means that the doctors have to be willing to gain knowledge about their various medical issues which make treatment different for them in some areas. it means that teachers need to be open to learning other styles of teaching and dealing with a child whose needs and abilities are different. It means that people need to stop assuming they have it all figured out, and be flexible, wiling to change, and grow and learn--not just once but everyday.
So, dear troll, it also means that as a parent, I need to work as hard as I can to find what works and what does not for my child. That in order for him to reach his fullest potential, have stability, develop appropriate social behaviors, and become a fully independent adult in another 15 years, I need to respond appropriately to his needs, and be his advocate to ensure that those environments and areas(medical, educational, psychosocial, developmental, and social) that are part of his life and vital to his growth and maturation, are appropriate and are helping rather than hurting his ability to become an independent adult. My job is not to ensure that he is always happy or have everything that he wants, my job is not to make the lives of those who know him easier and to pity them for their having to work with a child with challenges, my job is not to make excuses fro his behavior or to ignore his needs and try to force him to be "normal" (we all can see how easy to is to say to the child "get up and walk like a real kid" and when he does not to blame him for his insolence, or blame his parent fro carrying him--forget the fact that he has cerebral palsy and can even stand with out support--if that is ridiculous, why would you think that other special needs are less debilitating or more deliberate?).
My job and my passion to to help make the world a place where all people --ALL PEOPLE (even the comment trolls)--can be accepted for who they are, for the amazing things that they CAN do, for the unique ways that they can contribute to the growth and evolution of humanity, and for the blessing they can bring to all that they meet. And I know that I will meet many people (have already) that do not understand. People that can not see past their own personal experience to recognize that there are different kinds of people in the world and ALL have value. There are people who do not understand how you can be upset about something going on with a particular situation without hating the whole situation. People who do not get that just because something is less than ideal, that it is okay to express your thoughts about that less ideal issue without having to write off the whole institution. So, I hope that the commenter will have the courage and the respect to step forward and discuss their reflections openly and with thoughtful respect. And will remember that all of us get frustrated sometimes, and there is nothing wrong with being frustrated. God knows my son's teachers get frustrated, and struggle with how to be approach the situation, but sometimes it is overwhelming--and it is okay to feel overwhelmed, it is okay to need to walk away, it is okay to vent and to rant---and it is okay to then come full circle and be ready to step in again and try to work towards a solution. God knows we all hit different parts of that circle at different times...even in the same day.
So i will continue to work with the school personnel, with the teachers, with the therapist, with the doctors, with my son and with myself regarding ongoing issues at school. I will continue to vent when I need to, reflect on things when I need to ,work out my thoughts and feelings, work through new information, and be open to expressing all of it in a public forum--because I know that I am not alone in these challenges, I am not alone in these frustrations, I am not alone in these joys, I am not alone in these blessings---and even the trolls are there to remind me why I blog, why I think out loud (in writing even) and why i am NOT afraid to openly express my feelings in a public forum. There are others out there who need to know they are not alone in their experiences. There are those who like to hear how ideas and thought processes are moving so that they can use some of it for their situation. And there are those like the anonymous commenter, who need to express their own frustration, and remind me that what we think someone is saying is not always what they are saying. inference and implications may be completely different...and it is okay---each person lives their own life their own way.
Wednesday, February 29, 2012
Thinking...as Usual...
So, Josiah's return to school after break has not been so good. Something is causing him great distress there, to the point that even talking about school gives him a stomach ache. And he does not seem to be able to pinpoint exactly what it is that is just so problematic. He shares with me that is is afraid at school. The school does not seem to ever interpret his anger reaction as a shield against his fear--which tells me they do not know much about basic human dynamics. Most of the people I know put a face on fear that does not look like fear. For some people, fear shows up as depression. For some people fear presents as mania, they run around like crazy being super busy and never stopping--but it is because of fear that drives them. I have known many people who when they feel fear, the get defensive and angry. And anger covers their fear, but the problem is not anger, it is fear, and if you help alleviate the fear, all of the symptomatic fronts, all of the behaviors that human being have to try to hide the fear, will dissipate.
It does not matter if it is fear of physical harm, fear of not being good enough, fear of making mistakes, fear of failure, fear of not fitting in, fear of being seen as wrong, fear of not having needs met, fear of being emotionally injured, fear of not being able to succeed...all fear is fear, whether rational or not, whether well founded by someone from the outside or not, whether anyone else understands it or not....FEAR IS WHAT IT IS. And fear does not discriminate by gender, height, abilities, age, skin color, or any other of the artificial divisions we make between human beings. Fear is fear is fear, and whether you are an adult or a child, fat or thin, black or white, tall or short, male or female...fear is fear, and we all have different ways that we retaliate against fear. Some people laugh hysterically, so people cry hysterically, some people flutter around like a hummingbird on red bull, some people sit and stare out the window, some people sleep, some people are insomniacs, some people eat (and eat and eat), other people can barely keep water down, some people becoming bossy control freaks, some people become weepy incompetents, some people being red hot angry....
Until you calm the fear, until you help a person feel safe, until they know that they can be held, contained, protected, and know what to expect...until the fear is calmed...you can not control the behaviors, and the more you try to the greater the fear increases, and the behaviors start going in all different directions. When you try to stomp an an already full water balloon trying to make it smaller, it will pop. When you try to stomp on an already distressed human being, trying to stop the filling without stopping the flow, they will burst.
Calm the fears, give clear boundaries and safe, logical, compassionate consequences, give support and encouragement to move beyond fear, give a sense of belonging and safety...those go a long way to alleviating fear. Once a fear pattern and model has been in place for a long time, it is going to take a LOT more than a pat on the head and simple empty reassurance to reduce the fear that started months before and grew in response to inappropriate responses to need and/or fear expression.
So I am thinking it may be time to bring Josiah home, to finish the Kindergarten year at home, just as we did with Gonzo. Give him some time to learn and focus on schooling where he feels safe, and can then again start to equate learning with a safe activity. Then we can try again in first grade, to integrate him in the social industrial model of public education, hopefully with a better sense of himself, and more internal capacity to regulate his own fears and insecurities, and be better able to understand the oddities and social structure of public education. I DO believe that homeschooling done correctly is FAR, FAR superior to industrial institutional education, HOWEVER, I also believe that having the social training that a larger school population provides, and the greater range of experience with a variety of different adults and children, each bringing their own family culture and experience into the lives of the public school children is very important in helping children develop a stronger, broader sense of the world. If it were only about academic achievement, public school should be obliterated and replaced with conscientious homeschooling, as each academic plan/curriculum is based on each child's needs and interests. But school is a social experiment, and helps even out the family quirks, and introduce kids the the fact that everyone is different, believes different things, has different experiences, and THAT IT IS OKAY.
It does not matter if it is fear of physical harm, fear of not being good enough, fear of making mistakes, fear of failure, fear of not fitting in, fear of being seen as wrong, fear of not having needs met, fear of being emotionally injured, fear of not being able to succeed...all fear is fear, whether rational or not, whether well founded by someone from the outside or not, whether anyone else understands it or not....FEAR IS WHAT IT IS. And fear does not discriminate by gender, height, abilities, age, skin color, or any other of the artificial divisions we make between human beings. Fear is fear is fear, and whether you are an adult or a child, fat or thin, black or white, tall or short, male or female...fear is fear, and we all have different ways that we retaliate against fear. Some people laugh hysterically, so people cry hysterically, some people flutter around like a hummingbird on red bull, some people sit and stare out the window, some people sleep, some people are insomniacs, some people eat (and eat and eat), other people can barely keep water down, some people becoming bossy control freaks, some people become weepy incompetents, some people being red hot angry....
Until you calm the fear, until you help a person feel safe, until they know that they can be held, contained, protected, and know what to expect...until the fear is calmed...you can not control the behaviors, and the more you try to the greater the fear increases, and the behaviors start going in all different directions. When you try to stomp an an already full water balloon trying to make it smaller, it will pop. When you try to stomp on an already distressed human being, trying to stop the filling without stopping the flow, they will burst.
Calm the fears, give clear boundaries and safe, logical, compassionate consequences, give support and encouragement to move beyond fear, give a sense of belonging and safety...those go a long way to alleviating fear. Once a fear pattern and model has been in place for a long time, it is going to take a LOT more than a pat on the head and simple empty reassurance to reduce the fear that started months before and grew in response to inappropriate responses to need and/or fear expression.
So I am thinking it may be time to bring Josiah home, to finish the Kindergarten year at home, just as we did with Gonzo. Give him some time to learn and focus on schooling where he feels safe, and can then again start to equate learning with a safe activity. Then we can try again in first grade, to integrate him in the social industrial model of public education, hopefully with a better sense of himself, and more internal capacity to regulate his own fears and insecurities, and be better able to understand the oddities and social structure of public education. I DO believe that homeschooling done correctly is FAR, FAR superior to industrial institutional education, HOWEVER, I also believe that having the social training that a larger school population provides, and the greater range of experience with a variety of different adults and children, each bringing their own family culture and experience into the lives of the public school children is very important in helping children develop a stronger, broader sense of the world. If it were only about academic achievement, public school should be obliterated and replaced with conscientious homeschooling, as each academic plan/curriculum is based on each child's needs and interests. But school is a social experiment, and helps even out the family quirks, and introduce kids the the fact that everyone is different, believes different things, has different experiences, and THAT IT IS OKAY.
Friday, February 24, 2012
wow, a ten day break from blogging!
This is the longest break I think I have taken from blogging since I started this blog nearly a year ago.
So, I have been working a lot of the house, renovations seems to go so slowly. But we had the framing inspector come and he approved what has been done so far. So that is a good thing. I am still hopeful that somehow we will be able to be done by March 13th so we can be moved in by March 15th, which is when I have to be out of my apartment. It is coming along...I have faith that we will make it by the deadline.
Josiah showed some improvement during the remainder of that last week of school before the winter break. We have been working on reducing any potential bad behavior influence in case that is exacerbating the problem. Like I wrote last time, we have eliminated SpongeBob for the time being as so many of the rude things he was saying was coming from there. A and I evaluated video games and we discovered that the Hulk game they got for Christmas has a lot of "I'm gonna make you die" and "I'll break your neck sucker." and similar phases, we have decided to remove all superhero video games (and any superhero shows) for a while until the kids are able to understand that you just can NOT say those kinds of things outside of a video game. So essentially the kids 2 dimensional entertainment has been truncated to much more wholesome shows of their choosing--mainly Veggie Tales, Go Diego Go, Thomas the Train, Up, Curious George, etc.... and video games mainly racing games like Mario Cart, and WII play, MonkeyBall, and Sonic. the do have other games (Nemo, Dora, Madagascar, etc...) that they can play too.
In addition we have been working together on self-control techniques, reducing "freak out" behavior, super praising positive and wanted behavior and actions. The kids are being more responsible in cleaning up after themselves, which has been great, as Gonzo had been doing well with it, but Josiah had just been refusing to do it. And now they have both been helping, and HAPPY about it. Josiah, with verbal persuasion, actually wore his glasses for HOURS today, without complaining after the first 10 minutes. As he is supposed to wear them 6 plus hours a day, it is great to finally have some compliance in this area. I am hoping that as he returns to school next week, his good behavior and compliant behavior (I have been using a combination of collaborative problem solving, where he and I talk about a problem and decide together on a solution), and basic "I'm the mom and I love you so you need to do this. It is good for you because XYZ". Gonzo, as usual, is more problematic for me at home than he is a school, and so using the collaborative problem solving has been somewhat effective, but as soon as another person is in the mix, he becomes Mr. defiant and nastily rude to me about some things. Overall there has been some improvement in this area, but Mr. bossy and I still butt heads from time to time, which usually includes a lot of melodrama on his part. Overall though, this vacation has seen the kids working and playing well together, and having some good family moments.
I have been working on a few things in myself these past couple of weeks as well. To reduce stress I have been trying to do a guided mediation a few times a week, and it has been helpful, as well as some other centering exercises. I have also been trying to move my body more. I had mentioned previously that I am connecting socially with people in a neat virtual world called Second Life. They have an extremely wide variety of different sim worlds there, and so I pick and choose. I have found a couple of DJ music clubs and you can dance animate your avatar (the representation of yourself in the virtual world). So some nights I have decided to imitate my avatar with the dance moves. It has been fun! Though of course I close the shades, as I really don't think anyone wants to see me dancing around my living room. But it is a good workout, with great music and a lot of fun.
The next couple of weeks will be full of working on the house, packing the apartment, and praying that everything comes together in time....
So, I have been working a lot of the house, renovations seems to go so slowly. But we had the framing inspector come and he approved what has been done so far. So that is a good thing. I am still hopeful that somehow we will be able to be done by March 13th so we can be moved in by March 15th, which is when I have to be out of my apartment. It is coming along...I have faith that we will make it by the deadline.
Josiah showed some improvement during the remainder of that last week of school before the winter break. We have been working on reducing any potential bad behavior influence in case that is exacerbating the problem. Like I wrote last time, we have eliminated SpongeBob for the time being as so many of the rude things he was saying was coming from there. A and I evaluated video games and we discovered that the Hulk game they got for Christmas has a lot of "I'm gonna make you die" and "I'll break your neck sucker." and similar phases, we have decided to remove all superhero video games (and any superhero shows) for a while until the kids are able to understand that you just can NOT say those kinds of things outside of a video game. So essentially the kids 2 dimensional entertainment has been truncated to much more wholesome shows of their choosing--mainly Veggie Tales, Go Diego Go, Thomas the Train, Up, Curious George, etc.... and video games mainly racing games like Mario Cart, and WII play, MonkeyBall, and Sonic. the do have other games (Nemo, Dora, Madagascar, etc...) that they can play too.
In addition we have been working together on self-control techniques, reducing "freak out" behavior, super praising positive and wanted behavior and actions. The kids are being more responsible in cleaning up after themselves, which has been great, as Gonzo had been doing well with it, but Josiah had just been refusing to do it. And now they have both been helping, and HAPPY about it. Josiah, with verbal persuasion, actually wore his glasses for HOURS today, without complaining after the first 10 minutes. As he is supposed to wear them 6 plus hours a day, it is great to finally have some compliance in this area. I am hoping that as he returns to school next week, his good behavior and compliant behavior (I have been using a combination of collaborative problem solving, where he and I talk about a problem and decide together on a solution), and basic "I'm the mom and I love you so you need to do this. It is good for you because XYZ". Gonzo, as usual, is more problematic for me at home than he is a school, and so using the collaborative problem solving has been somewhat effective, but as soon as another person is in the mix, he becomes Mr. defiant and nastily rude to me about some things. Overall there has been some improvement in this area, but Mr. bossy and I still butt heads from time to time, which usually includes a lot of melodrama on his part. Overall though, this vacation has seen the kids working and playing well together, and having some good family moments.
I have been working on a few things in myself these past couple of weeks as well. To reduce stress I have been trying to do a guided mediation a few times a week, and it has been helpful, as well as some other centering exercises. I have also been trying to move my body more. I had mentioned previously that I am connecting socially with people in a neat virtual world called Second Life. They have an extremely wide variety of different sim worlds there, and so I pick and choose. I have found a couple of DJ music clubs and you can dance animate your avatar (the representation of yourself in the virtual world). So some nights I have decided to imitate my avatar with the dance moves. It has been fun! Though of course I close the shades, as I really don't think anyone wants to see me dancing around my living room. But it is a good workout, with great music and a lot of fun.
The next couple of weeks will be full of working on the house, packing the apartment, and praying that everything comes together in time....
Tuesday, February 14, 2012
changes I am making
Okay, so I know earlier today I had my little rant about things about school. It is just that it is such a difficult situation, and the school and I both have high hopes for my son, but we also have different ideas of what that means. I want Josiah to be the best Josiah that he can be--to love who he is, the embrace his strengths and his weaknesses, to find what makes him who he is, and to find the best way that he can contribute to and make an impact in the world. I want him to be happy with who he is, happy with the choices that he makes, and be a person that others can respect and cherish for who he is and how he chooses to live. That is what I want for my son.
The school also wants him to strive to reach his highest potential. they want him to come to school ready to follow the schedule that all of the other kids follow. They want him to move through the day in the same way other kids do. They want him to not question their authority, and just calmly and kindly associate with his peers and his teachers in a way that is respectful and acceptable in our society. They want him to conform to the needs and routines of the institution. They recognise that due to his physical and developmental challenges, he needs help and some accommodation to do this, and expect him to just accept their help and accommodations just as they expect him to follow the rules. They want him to be successful in the arena that they are setting forth for him.
Both of these goals for Josiah are good. Both have the right focus--wanting to help Josiah to succeed and find his niche in the world, and to do so with self confidence, self-discipline, and self awareness, as well as a more local and global awareness of how he and his actions impact others.
But what does Josiah want?
obviously we are all missing something here--as he is NOT reaching those goals. What is his focus, what lens is he viewing the world through? What is the motivation that he has for his behaviors and the words that he says? When he gets angry and frustrated, he shouts out things and says he wants to hurt people, but I have watched him and know that he actually does not want to hurt or upset others, but when he is so upset, I think he puts that "bully" cloak on because it hides his fear. He talks to me about being afraid, when I ask him to tell me about what was going on. At school he says he is angry, at home he tells me he was scared. But at school he can not identify why he was angry and at home he rarely can identify verbally why he was scared.
I have spent quite a bit of time this evening going over his daily reports. January was an amazing month of him, almost every day was a "star student" day (meaning that he did very well, and even if he had a mishap, that he worked to correct it and overcome it). Then suddenly, with very little lead up time, he was having horrible days at school again. he refuses to go to music, which is the class he loves the most (which started before the big meltdowns) and is telling me that he is scared to go there because he got in trouble, though no one has mentioned trouble in music class. Other things I was looking at was the phrases he is saying when he is angry. At first they made no sense to me, as they are not ones we use often (if at all) in our house--"You Suck" "I hate people" "Piece of garbage" etc.... And as read through them a few times, suddenly I could hear them in my head being said by a specific voice--the voice of Squidward on Sponge bob square pant. Almost every single rude and mean thing Josiah has been saying has come from Squidward!!
So I started really thinking about this...In many wise and religious texts it talks about how what we focus on is important to our lives and/or becomes a part of us. Phillipians 4:8 says "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." (NIV) This idea is well supported by the Law of Attraction teachings, "What you focus on expands..." "What you think about you bring about..." and a number of other references to this in the movie/book The Secret, as well as many other books. I'd go more into this but it is late and anyone who really wants to know can find many more sources than I just by using google.
Anyway, with this in mind, A and I talked about it, and we decided that we will see what happens if we eliminate Sponge Bob Square pants from the kids viewing. At this point I am willing to try anything (including getting rid of TV, video games and all other 2 dimensional substitutes for life--though that is a bit drastic). I am toying with the idea of limiting viewing to educational shows only, but for now I think we will go wit eliminating Sponge Bob as that seems to be Josiah's focus and his internalization of some of the attitudes and phrases from there. I am also further reducing video gaming time (which I had started already, as Josiah has been having extreme reactions to losing--it doesn't help that his brother can not stop himself from rubbing it it very nonchalantly anytime Josiah does not get a perfect score).
I am really hoping it will help. i am not sure what else to change....
The school also wants him to strive to reach his highest potential. they want him to come to school ready to follow the schedule that all of the other kids follow. They want him to move through the day in the same way other kids do. They want him to not question their authority, and just calmly and kindly associate with his peers and his teachers in a way that is respectful and acceptable in our society. They want him to conform to the needs and routines of the institution. They recognise that due to his physical and developmental challenges, he needs help and some accommodation to do this, and expect him to just accept their help and accommodations just as they expect him to follow the rules. They want him to be successful in the arena that they are setting forth for him.
Both of these goals for Josiah are good. Both have the right focus--wanting to help Josiah to succeed and find his niche in the world, and to do so with self confidence, self-discipline, and self awareness, as well as a more local and global awareness of how he and his actions impact others.
But what does Josiah want?
obviously we are all missing something here--as he is NOT reaching those goals. What is his focus, what lens is he viewing the world through? What is the motivation that he has for his behaviors and the words that he says? When he gets angry and frustrated, he shouts out things and says he wants to hurt people, but I have watched him and know that he actually does not want to hurt or upset others, but when he is so upset, I think he puts that "bully" cloak on because it hides his fear. He talks to me about being afraid, when I ask him to tell me about what was going on. At school he says he is angry, at home he tells me he was scared. But at school he can not identify why he was angry and at home he rarely can identify verbally why he was scared.
I have spent quite a bit of time this evening going over his daily reports. January was an amazing month of him, almost every day was a "star student" day (meaning that he did very well, and even if he had a mishap, that he worked to correct it and overcome it). Then suddenly, with very little lead up time, he was having horrible days at school again. he refuses to go to music, which is the class he loves the most (which started before the big meltdowns) and is telling me that he is scared to go there because he got in trouble, though no one has mentioned trouble in music class. Other things I was looking at was the phrases he is saying when he is angry. At first they made no sense to me, as they are not ones we use often (if at all) in our house--"You Suck" "I hate people" "Piece of garbage" etc.... And as read through them a few times, suddenly I could hear them in my head being said by a specific voice--the voice of Squidward on Sponge bob square pant. Almost every single rude and mean thing Josiah has been saying has come from Squidward!!
So I started really thinking about this...In many wise and religious texts it talks about how what we focus on is important to our lives and/or becomes a part of us. Phillipians 4:8 says "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." (NIV) This idea is well supported by the Law of Attraction teachings, "What you focus on expands..." "What you think about you bring about..." and a number of other references to this in the movie/book The Secret, as well as many other books. I'd go more into this but it is late and anyone who really wants to know can find many more sources than I just by using google.
Anyway, with this in mind, A and I talked about it, and we decided that we will see what happens if we eliminate Sponge Bob Square pants from the kids viewing. At this point I am willing to try anything (including getting rid of TV, video games and all other 2 dimensional substitutes for life--though that is a bit drastic). I am toying with the idea of limiting viewing to educational shows only, but for now I think we will go wit eliminating Sponge Bob as that seems to be Josiah's focus and his internalization of some of the attitudes and phrases from there. I am also further reducing video gaming time (which I had started already, as Josiah has been having extreme reactions to losing--it doesn't help that his brother can not stop himself from rubbing it it very nonchalantly anytime Josiah does not get a perfect score).
I am really hoping it will help. i am not sure what else to change....
Life is sstill good...but....
Have you ever noticed that when a child is exhibiting challenging behavior, the school is quick to blame the parents. But then when the child's behavior improves, the school pats themselves on the back about what a great job they are doing, with no credit given to the parents for the good behavior. And then if that same child has a challenging week after a period of good, come then call that they need to talk about what is going on at home, because of course if it is bad behavior it must be because the parents SUCK. I am sure they don't consciously think that, but that is essentially what happens, and the message it conveys:
Good child=Good Teacher, Bad Child= Bad Parent
Forget the fact that he did not exhibit these behaviors until he started school with them.
Forget that nothing significant has changed at home recently to prompt behaviorally negative reactions.
Forget that when his behavior improved there was never a call home that said "He is doing great! What has changed at home to bring about such positive behavior changes? lets meet to discuss what can we do to understand why he is doing well, so that we can keep it going."
But give him a few days of poor behavior and we get the call about needing a meeting. Because obviously if he is having a bad week, it must be something the parent is doing wrong. A child is not allowed to just have a bad week.
I just am at a loss. I have no idea why he had a bad week last week, or had a rough start to yesterday. He has been sleeping fine. Last week I though tit was because he had a bad bout of constipation, but we resolved that and he is "going" fine again. He has been eating fine, sleeping fine, a little clingy maybe, definitely a little more on edge, but I am not sure why. Perhaps his body is fighting off a cold, but he has no cold symptoms. Perhaps he is frustrated with something. Perhaps he is just human, and we all have weeks that we just are more grumpy than other weeks, without really knowing why. I am just so tired of not only dealing with trying to help Josiah over whatever hump it is, but having to deal with the additional stress of school personnel who seem to think that something I am doing is the cause. I am tired of the whole school sh*t. He is not a child that institutionalizes well, which actually bodes very well for his adult life and his ability to someday be able to think for himself, to be creative and become someone amazing--As long as they don't beat that out of him by trying to jam him into a round peg hole when he does not conform like a little drone. "yes, teacher" "no, teacher" "flowers are always red teacher, I understand" "leaves are always green teacher". A big part of the problem Josiah is having this year is that he sees all of the colors of the rainbow, all of the colors of the rising sun, all of the colors of the flowers....
He is frustrated...AND THEY DON'T GET THAT!!
Last week I said that maybe he is just having a period of time where he is frustrated by his limitations, and no one can do anything to reduce those limitations. So sometimes it comes out in various ways, he is not always going to intellectualize it and say, "boy I am feeling frustrated this week about my physical limitations."
He just knows he is tired of not being able to do what he sees other people doing. To me, that would sometime rear its head and give me an underlying grumpiness, even if I did not consciously acknowledge it. but they said "no, no he has not expressed that at all" completely missing the point of what I was saying.
God i am glad I had teachers when I was a child who, for the most part, could see the person in the child (aside from my third grade teacher who was just a monster). But anyway, I am done with my rant. I am hoping that things improve very soon.
Good child=Good Teacher, Bad Child= Bad Parent
Forget the fact that he did not exhibit these behaviors until he started school with them.
Forget that nothing significant has changed at home recently to prompt behaviorally negative reactions.
Forget that when his behavior improved there was never a call home that said "He is doing great! What has changed at home to bring about such positive behavior changes? lets meet to discuss what can we do to understand why he is doing well, so that we can keep it going."
But give him a few days of poor behavior and we get the call about needing a meeting. Because obviously if he is having a bad week, it must be something the parent is doing wrong. A child is not allowed to just have a bad week.
I just am at a loss. I have no idea why he had a bad week last week, or had a rough start to yesterday. He has been sleeping fine. Last week I though tit was because he had a bad bout of constipation, but we resolved that and he is "going" fine again. He has been eating fine, sleeping fine, a little clingy maybe, definitely a little more on edge, but I am not sure why. Perhaps his body is fighting off a cold, but he has no cold symptoms. Perhaps he is frustrated with something. Perhaps he is just human, and we all have weeks that we just are more grumpy than other weeks, without really knowing why. I am just so tired of not only dealing with trying to help Josiah over whatever hump it is, but having to deal with the additional stress of school personnel who seem to think that something I am doing is the cause. I am tired of the whole school sh*t. He is not a child that institutionalizes well, which actually bodes very well for his adult life and his ability to someday be able to think for himself, to be creative and become someone amazing--As long as they don't beat that out of him by trying to jam him into a round peg hole when he does not conform like a little drone. "yes, teacher" "no, teacher" "flowers are always red teacher, I understand" "leaves are always green teacher". A big part of the problem Josiah is having this year is that he sees all of the colors of the rainbow, all of the colors of the rising sun, all of the colors of the flowers....
He is frustrated...AND THEY DON'T GET THAT!!
Last week I said that maybe he is just having a period of time where he is frustrated by his limitations, and no one can do anything to reduce those limitations. So sometimes it comes out in various ways, he is not always going to intellectualize it and say, "boy I am feeling frustrated this week about my physical limitations."
He just knows he is tired of not being able to do what he sees other people doing. To me, that would sometime rear its head and give me an underlying grumpiness, even if I did not consciously acknowledge it. but they said "no, no he has not expressed that at all" completely missing the point of what I was saying.
God i am glad I had teachers when I was a child who, for the most part, could see the person in the child (aside from my third grade teacher who was just a monster). But anyway, I am done with my rant. I am hoping that things improve very soon.
Wednesday, January 25, 2012
Has it really been a whole week!...
Wow!! Has it really been a whole week since I last posted!!
Life has been gloriously busy--The renovations are moving forward at about the pace they have been. The framing is almost completed, the plumbing is coming together, and the electric will be tackled soon. Then the three preliminary inspections can be approved, and we can finish her. That is something I am looking forward to with great relief and appreciation.
I have also completed the Health and Safety Training course required for the day care licensing procedure. I still have my basic routine, developmentally appropriate teaching, and discipline plans still to complete and send in. I have some issues with brevity, and am trying to figure out how to respond to the inquiries in the application packet that both satisfies what I want to say AND fits in the small space they provide for the answers. Aside from that and getting their medical forms to my doctor and the kids doctor to sign off, I just have the floor plan layout and evacuation route plan, which I hesitate to finish until after the framing inspection in case we need to alter anything. So it is mostly just paperwork left. I do need to update my First Aid and CPR certification, but that is a one day course. So there is still a bunch to do, but the end of the tunnel is in sight.
The kids are doing well. Gonzo is going to be Student of the Month in his class (the teacher emailed me yesterday), as he has been having an outstanding month, many Outstanding Day Orange ratings for the month. Josiah has been doing great with school lately. He still has some outbursts but, they seems to be less intense, less frequent, and the teachers have been able to help him turn the corner and come back into a better frame of mind. He also has been doing more academic work, and they have been scribing more for him, which makes a difference.
Josiah also had another dentist appointment yesterday, and he did great!! We have one final appointment to fix the last of the issues, and the hardest ones. So next Thursday will be the last treatment in a long nearly 2 year saga of getting his dental work done. Dr. Baim has been incredible with him. I am very pleased with how comfortable she makes him feel.
I also have been doing some cleaning at the apartment, since my lease is technically up on February 15th. I deep cleaned the bathroom the other day, replaced the toilet seat, which I have been meaning to do for a while now, and scrubbed behind and under everything, I even washed the walls and door. So, one room down. I also have been sorting and packing the boys clothes so that the only thing we have to move at the last minute are the sets of clothes they wear to school. If I can get a bunch of packing and sorting done now, then the move in 3 weeks will go much better, especially if we have not gotten the certificate of occupancy by then and the boys have to live with A for a couple of weeks while we finish the house.
Speaking of A, we had a great visit this weekend with A's sister who came for an overnight visit. It was great to see her, and the boys love her dearly. A has been doing okay. One client has left the area though, and so A's caseload dropped, and is a bit worried about making ends meet. Hopefully a couple of people will be added soon, so that that A will not have to worry. A has also been great about taking the kids, though not without some guilt-tripping, it has been a good thing to know the kids are safe and having fun while I am spending many evenings working on the new place for them.
So that is a basic recap of what I have been rolling with over the past week. I am looking forward to a highly productive week/weekend to get as much done as possible on the house. If we can get the preliminary inspections next week, the walls and finishing should come together pretty quickly. I hope to post more than once a week, so hopefully I'll have a short update for you all over the weekend.
Life has been gloriously busy--The renovations are moving forward at about the pace they have been. The framing is almost completed, the plumbing is coming together, and the electric will be tackled soon. Then the three preliminary inspections can be approved, and we can finish her. That is something I am looking forward to with great relief and appreciation.
I have also completed the Health and Safety Training course required for the day care licensing procedure. I still have my basic routine, developmentally appropriate teaching, and discipline plans still to complete and send in. I have some issues with brevity, and am trying to figure out how to respond to the inquiries in the application packet that both satisfies what I want to say AND fits in the small space they provide for the answers. Aside from that and getting their medical forms to my doctor and the kids doctor to sign off, I just have the floor plan layout and evacuation route plan, which I hesitate to finish until after the framing inspection in case we need to alter anything. So it is mostly just paperwork left. I do need to update my First Aid and CPR certification, but that is a one day course. So there is still a bunch to do, but the end of the tunnel is in sight.
The kids are doing well. Gonzo is going to be Student of the Month in his class (the teacher emailed me yesterday), as he has been having an outstanding month, many Outstanding Day Orange ratings for the month. Josiah has been doing great with school lately. He still has some outbursts but, they seems to be less intense, less frequent, and the teachers have been able to help him turn the corner and come back into a better frame of mind. He also has been doing more academic work, and they have been scribing more for him, which makes a difference.
Josiah also had another dentist appointment yesterday, and he did great!! We have one final appointment to fix the last of the issues, and the hardest ones. So next Thursday will be the last treatment in a long nearly 2 year saga of getting his dental work done. Dr. Baim has been incredible with him. I am very pleased with how comfortable she makes him feel.
I also have been doing some cleaning at the apartment, since my lease is technically up on February 15th. I deep cleaned the bathroom the other day, replaced the toilet seat, which I have been meaning to do for a while now, and scrubbed behind and under everything, I even washed the walls and door. So, one room down. I also have been sorting and packing the boys clothes so that the only thing we have to move at the last minute are the sets of clothes they wear to school. If I can get a bunch of packing and sorting done now, then the move in 3 weeks will go much better, especially if we have not gotten the certificate of occupancy by then and the boys have to live with A for a couple of weeks while we finish the house.
Speaking of A, we had a great visit this weekend with A's sister who came for an overnight visit. It was great to see her, and the boys love her dearly. A has been doing okay. One client has left the area though, and so A's caseload dropped, and is a bit worried about making ends meet. Hopefully a couple of people will be added soon, so that that A will not have to worry. A has also been great about taking the kids, though not without some guilt-tripping, it has been a good thing to know the kids are safe and having fun while I am spending many evenings working on the new place for them.
So that is a basic recap of what I have been rolling with over the past week. I am looking forward to a highly productive week/weekend to get as much done as possible on the house. If we can get the preliminary inspections next week, the walls and finishing should come together pretty quickly. I hope to post more than once a week, so hopefully I'll have a short update for you all over the weekend.
Wednesday, January 18, 2012
CRAZY Week!>>>
This has been a crazy week. Well the last couple of weeks have been crazy. Between dentist appointments, other appointments, required trainings (an hour away, six hours a day) for the day care license, and the renovations of the house, it has been absolutely crazy.
The renovations are moving along. We have the plumbing drains laid out, still need to lay out the actual water pipes, but those are easier. The framing for everything is just about ready for the framing inspection. We are hoping to get the plumbing and electric done so that the three inspections can be done at the same time. After that, up goes the sheet rock, then taping and spackling, painting, flooring and the final inspection. We have not had as much time as I had hoped to work on it. I was hoping we would have 4-5 days a week, at least 4 hours each day. But it has been a lot of hit or miss, with 2-3 days a week, some with short 2 hour days, others with 7 hour days. I am still hopeful that we will make my deadline of February 15th to be moved out of here and into the new place. We just will not have a long to move and clean as I had hoped. I know it might be a bit tight, but I think if we can keep focused, it will happen. My goal, if my father can be there for most of it as I need his know how, is to finish the windows, the plumbing and the floor joists for the bathroom this week. Next week I am hoping we can get eh fire wall framing and all of the electrical done (then we can get the inspections done hopefully by the 27th). With a few extra hands we should be able to get the sheet rock up that first week in February, and most of the taping and spackling. Then we have about a week to paint and put down carpet to get the final inspection by Feb13th. Okay, so it may not quite work out that way, but I am hoping.
Today I pick the kids up from school early and we go to see a family therapist. I have been trying to get us into family therapy for a while, but the one up here just was not very useful, for one she decided that since the kids have counseling at school, she did not think they should participate in our family counseling. There is obviously a lack of understanding of what school counseling is, as it is not to address overall problems, but rather focuses on specific issues relating to school that need work. And everything I talked about in addressing the behavioral issues at home, she just said I was doing a great job and offered a few minimal suggestions. Nothing that really helped look at the dynamics of the family and how the kids special needs and behaviors were impacting each other and the family as a whole,. nor how my interaction with them was impacting my relationship with each one and impacting their relationships with each other. So we are going down to the nearest city and hour away and seeing if there is a more helpful therapist who can help us create more peace and cooperation in the household, as well as benefit improving behavior at school and other public places.
So, that's all for now...
The renovations are moving along. We have the plumbing drains laid out, still need to lay out the actual water pipes, but those are easier. The framing for everything is just about ready for the framing inspection. We are hoping to get the plumbing and electric done so that the three inspections can be done at the same time. After that, up goes the sheet rock, then taping and spackling, painting, flooring and the final inspection. We have not had as much time as I had hoped to work on it. I was hoping we would have 4-5 days a week, at least 4 hours each day. But it has been a lot of hit or miss, with 2-3 days a week, some with short 2 hour days, others with 7 hour days. I am still hopeful that we will make my deadline of February 15th to be moved out of here and into the new place. We just will not have a long to move and clean as I had hoped. I know it might be a bit tight, but I think if we can keep focused, it will happen. My goal, if my father can be there for most of it as I need his know how, is to finish the windows, the plumbing and the floor joists for the bathroom this week. Next week I am hoping we can get eh fire wall framing and all of the electrical done (then we can get the inspections done hopefully by the 27th). With a few extra hands we should be able to get the sheet rock up that first week in February, and most of the taping and spackling. Then we have about a week to paint and put down carpet to get the final inspection by Feb13th. Okay, so it may not quite work out that way, but I am hoping.
Today I pick the kids up from school early and we go to see a family therapist. I have been trying to get us into family therapy for a while, but the one up here just was not very useful, for one she decided that since the kids have counseling at school, she did not think they should participate in our family counseling. There is obviously a lack of understanding of what school counseling is, as it is not to address overall problems, but rather focuses on specific issues relating to school that need work. And everything I talked about in addressing the behavioral issues at home, she just said I was doing a great job and offered a few minimal suggestions. Nothing that really helped look at the dynamics of the family and how the kids special needs and behaviors were impacting each other and the family as a whole,. nor how my interaction with them was impacting my relationship with each one and impacting their relationships with each other. So we are going down to the nearest city and hour away and seeing if there is a more helpful therapist who can help us create more peace and cooperation in the household, as well as benefit improving behavior at school and other public places.
So, that's all for now...
Tuesday, January 10, 2012
Another dentist appointment and quick renovation update
Josiah did very well at the dentist yesterday. They really were great about introducing him to the dental instruments, letting him touch and hold them, and helped him get comfortable with the tools. They also were very respectful and compassionate with him when he was SO GREAT at expressing his feelings, both when feeling fine and when feeling scared or nervous. He was GREAT at being open with his feelings and asking questions. I am so proud of him.
While we were there, they had a cancellation for TODAY. so they asked us if we can come back today at noon. Today will be the first day with the drill, but I am hopeful that he will do well. I am so grateful to have been recommended to this dentist. I am very hopeful that this will work out for all of his dental issues. I'll keep you all updated....
Now....a quick update about the house renovations...They are FINALLY underway in a real way. We have pulled a lot of wire out of the walls that was already unhooked. The walls for the bedrooms are up. The water damaged sections of the ceiling are down with new pieces going up today while I am at the dentist. The bathroom framing is supposed to go up today as well, according to my brother. That would be wonderful. Electrical is going to take time. We have done some already with unhooking circuits, moving light fixtures, and moving some things around. Being a former laundromat, there were a great many outlets. So we have been following the maze of conduits.
I would say that in another week or so we will have a framing and plumbing inspection and be able to start sheet rocking one side of the new walls. It may take a couple of weeks before we have the electrical done and ready for inspection. After that, it is a matter of putting up the rest of the walls, painting, moulding, flooring, and then the final inspection, hopefully no later than the first week in February (as I already gave my notice on moving out of here by the 15th). Moving will hopefully be the 1st or second weekend in February....yippee!!
While we were there, they had a cancellation for TODAY. so they asked us if we can come back today at noon. Today will be the first day with the drill, but I am hopeful that he will do well. I am so grateful to have been recommended to this dentist. I am very hopeful that this will work out for all of his dental issues. I'll keep you all updated....
Now....a quick update about the house renovations...They are FINALLY underway in a real way. We have pulled a lot of wire out of the walls that was already unhooked. The walls for the bedrooms are up. The water damaged sections of the ceiling are down with new pieces going up today while I am at the dentist. The bathroom framing is supposed to go up today as well, according to my brother. That would be wonderful. Electrical is going to take time. We have done some already with unhooking circuits, moving light fixtures, and moving some things around. Being a former laundromat, there were a great many outlets. So we have been following the maze of conduits.
I would say that in another week or so we will have a framing and plumbing inspection and be able to start sheet rocking one side of the new walls. It may take a couple of weeks before we have the electrical done and ready for inspection. After that, it is a matter of putting up the rest of the walls, painting, moulding, flooring, and then the final inspection, hopefully no later than the first week in February (as I already gave my notice on moving out of here by the 15th). Moving will hopefully be the 1st or second weekend in February....yippee!!
Monday, January 9, 2012
Off to the dentist...again....
The dental consult went well last week for Josiah. This new dentist feels that the issues with his teeth, being that they are all baby teeth, are not severe enough to warrant the risk of anesthesia (which is what we said 2 1/2 years ago to the previous dentist who made us jump through hoops for so long that Josiah teeth got worse and worse. I wish we had found this dentist back them...).
So....anyway.....she wants to do a series of in-the-chair dental appointments to fill in the holes in his teeth, only a couple of which have actual decay in them. She feels that the vast majority of the work can be done without even needing Novocaine. The worst two teeth are the i-teeth, which are the ones that I have stressed about for the past few years, when they came in with such obvious holes when he was a baby. Those may need some numbing to work on. The others are just surface and just need to be cleaned and filled in order to prevent decay (or further decay in a couple of them). Of course he will actually have to cooperate and LET her work on his teeth, which with Josiah can be hit or miss. If he refuses to cooperate, then we will have to look again at anesthesia, because the holes do need to be filled. Please pray that he will be calm and cooperative through this series of dental appointments, so that his teeth can be fixed without the risk of anesthesia.
Thanks!
So....anyway.....she wants to do a series of in-the-chair dental appointments to fill in the holes in his teeth, only a couple of which have actual decay in them. She feels that the vast majority of the work can be done without even needing Novocaine. The worst two teeth are the i-teeth, which are the ones that I have stressed about for the past few years, when they came in with such obvious holes when he was a baby. Those may need some numbing to work on. The others are just surface and just need to be cleaned and filled in order to prevent decay (or further decay in a couple of them). Of course he will actually have to cooperate and LET her work on his teeth, which with Josiah can be hit or miss. If he refuses to cooperate, then we will have to look again at anesthesia, because the holes do need to be filled. Please pray that he will be calm and cooperative through this series of dental appointments, so that his teeth can be fixed without the risk of anesthesia.
Thanks!
Thursday, January 5, 2012
2 more pounds........and dentist saga continues
So.....I got on the scale this morning for the first time since before the holidays, and was afriad of what I might see. Much to my joy and surprise, I actually lost another two pounds even with all the holiday eating and the candy that I am not supposed to have. So yeah!!! I am down another two pound--bit by bit it is coming off.
And I ask you for your prayers today, send your positive energy and your focused intention...Josiah is having a consult with another dentist. I am extremely nervous about this, as this is the dentist that the other dentist (who gave us a run around for over 18 months before deciding they couldn't treat his teeth) referred us to as they do dental surgery at the hospital. I am hoping that they will be a good dentist, a compassionate dentist, and one that will understand that his teeth continue to get worse the longer he is jerked around by dentists. What should have been a simple small filling 18 months ago has gotten to the point of probably needing to be an extraction.
Please pray for calm and peace for me, and that I will have good insight inot whether or not this dentist is going to treat Josiah with the respect and medical care that he deserves.
And I ask you for your prayers today, send your positive energy and your focused intention...Josiah is having a consult with another dentist. I am extremely nervous about this, as this is the dentist that the other dentist (who gave us a run around for over 18 months before deciding they couldn't treat his teeth) referred us to as they do dental surgery at the hospital. I am hoping that they will be a good dentist, a compassionate dentist, and one that will understand that his teeth continue to get worse the longer he is jerked around by dentists. What should have been a simple small filling 18 months ago has gotten to the point of probably needing to be an extraction.
Please pray for calm and peace for me, and that I will have good insight inot whether or not this dentist is going to treat Josiah with the respect and medical care that he deserves.
Monday, January 2, 2012
A New Year, A New Start
Well, the holiday week certainly kept me busy. Part of that was this little thing called a Kindle that A got for me.....So I have read five books since Christmas (I know that is a bit excessive). I am so excited about how easy it is to get a book. I just need to watch my budget and use the library and free collections more often than buying a new book, or else my basic life will suffer.
My house is still a wreck. Although I have been working all week in addition to reading, I have also started work (or rather my father has started) on the actual renovating of the new house. The tear down phase is pretty much done, just a couple of damaged ceiling areas to tear down still. The main wall for the boys rooms went up yesterday. I can not help much during this framing, electrical and plumbing stage, as I have minimal knowledge about how to do those three things. It would slow him down too much to be teaching me as we go because I am struggling to pay for two homes at the same time, so finishing as quickly as we can is important. After the framing, electrical and plumbing inspection, then we can put up the sheet rock at which point I can actually be of use. I CAN sheet rock, tape, spackle, paint, and then deal with flooring and molding. Then we can have the final inspection, get our CO and move in. Then I can give this apartment a thorough cleaning, and be done here. I also am looking forward to having a child care area that is separate from the main living and sleeping area of my home. It will be easier to design educational and fulfilling activities for the kids I care for, and will be able to keep my own children's stuff more protected and private, as the child care kids will not have access to their rooms. Here is so small that the kids use the living room/kitchen and the boys bedroom for playing as there is too little room to play and do projects otherwise.
I look forward to us having our own house again, and to getting the day care license process completed, then I make more than $3 an hour because I can have a few kids . Iin NY you can not have more than 2 kids at a time without the license, and in this area many people make minimum wage or barely above it, so can not pay more than $2-3 an hour--and the child care subsidy pays even less than that for people who qualify! Add int hat very few people have full time jobs year round up here, and you can see that making an income babysitting is not easy. Actually making a livable income at all is a challenge. But when I can have 4-5 kids at $2-3 an hour, I can make enough to actually eek out a living for me and the kids.
This week has also see A really step up to the plate with the kids. A has been sober for one month as of Christmas Day, and the changes that I see remind me of the person that I met nearly eight years ago. It is amazing how much addiction can change a person. We have a lot of baggage from the past few years, so I am not sure if our relationship could ever truly heal enough to consider getting back together, but it is good to the person that knew back them again. Of course it is not easy, and healing takes time, but I see A being more responsible with work, with the kids, and with taking care of the things A needs to rather than waiting for others (like me) to do it. Each of the kids spent one night at A's by themselves, and then they have spent 3 nights at A's together. I would love to say that I got to sleep in those days, but alas I still had kids to babysit, so the only day I slept in (to 9:30!! after getting up at my normal 6:30 to let the dog out and back in of course, but went back to bed). It was New Years Day. I went over to A's for New Year's eve, and the kids stayed up to watch the ball drop on TV. This was the first time they stayed up for New Year's Eve. Then I tucked them into their beds at A's house and headed home. Of course I ended up staying up until 2:30am reading, so I did not actually catch up on any sleep, sheesh!!
I am looking fr\orward tom this new year. I have many unfinished or partially finished goals from the last couple of years, and I will continue working on them. The three biggies I hope to continue this year are getting healthier physically, getting healthier spiritually, and getting healthier financially. Three facets of "wealth" in helping to transform my life.
Three primary focuses for the physical aspect: exercising 5 days a week needs to start happening again; eating more vegetables and fruit and less processed carbohydrates, and being more conscientious with food and snack choices (broth or soup for a snack instead of cookies or a bowl of cereal; drinking ample amounts of water; drinking hot tea between meals instead of immediately reaching for something to chew on; chewing gum when I really need the sensation of chewing; planning my meals beforehand so that I know I am eating a well balanced, nutrient dense meal, instead of throwing whatever together at the last minute).
Three primary focuses for the spiritual aspect: meditating at least 15 minutes a day; teaching my children about and living life as a prayer (being aware that everything I do can be an act of prayer--a way of communicating with and connecting to the Divine); and using self-hypnosis to actively work on emotional/mental blockages and to transform negative thinking patterns and habits.
Three primary focuses for the financial aspect: Making a reasonable budget based on actual spending needs and committing to it fully; Getting the day care business underway and being very reasonable with the budget; and putting some time and effort into the two business I have underway--finish my hypnosis training and get certified so I can make and sell some hypnosis MP3 and CD's, and work on my Ambit business, which my brother is law is making a six figure income from after only 2 years of being an independent consultant, so I know the company is honest, the service is good, and it is a great way to help others make money while helping their friends and family save money on electricity. I just need to find the time to put into building my business to bring in more income.
So three focus areas for my continued life transformation of my life. May 2012 bring blessings to you from unexpected places. And may you be open to being transformed!!
My house is still a wreck. Although I have been working all week in addition to reading, I have also started work (or rather my father has started) on the actual renovating of the new house. The tear down phase is pretty much done, just a couple of damaged ceiling areas to tear down still. The main wall for the boys rooms went up yesterday. I can not help much during this framing, electrical and plumbing stage, as I have minimal knowledge about how to do those three things. It would slow him down too much to be teaching me as we go because I am struggling to pay for two homes at the same time, so finishing as quickly as we can is important. After the framing, electrical and plumbing inspection, then we can put up the sheet rock at which point I can actually be of use. I CAN sheet rock, tape, spackle, paint, and then deal with flooring and molding. Then we can have the final inspection, get our CO and move in. Then I can give this apartment a thorough cleaning, and be done here. I also am looking forward to having a child care area that is separate from the main living and sleeping area of my home. It will be easier to design educational and fulfilling activities for the kids I care for, and will be able to keep my own children's stuff more protected and private, as the child care kids will not have access to their rooms. Here is so small that the kids use the living room/kitchen and the boys bedroom for playing as there is too little room to play and do projects otherwise.
I look forward to us having our own house again, and to getting the day care license process completed, then I make more than $3 an hour because I can have a few kids . Iin NY you can not have more than 2 kids at a time without the license, and in this area many people make minimum wage or barely above it, so can not pay more than $2-3 an hour--and the child care subsidy pays even less than that for people who qualify! Add int hat very few people have full time jobs year round up here, and you can see that making an income babysitting is not easy. Actually making a livable income at all is a challenge. But when I can have 4-5 kids at $2-3 an hour, I can make enough to actually eek out a living for me and the kids.
This week has also see A really step up to the plate with the kids. A has been sober for one month as of Christmas Day, and the changes that I see remind me of the person that I met nearly eight years ago. It is amazing how much addiction can change a person. We have a lot of baggage from the past few years, so I am not sure if our relationship could ever truly heal enough to consider getting back together, but it is good to the person that knew back them again. Of course it is not easy, and healing takes time, but I see A being more responsible with work, with the kids, and with taking care of the things A needs to rather than waiting for others (like me) to do it. Each of the kids spent one night at A's by themselves, and then they have spent 3 nights at A's together. I would love to say that I got to sleep in those days, but alas I still had kids to babysit, so the only day I slept in (to 9:30!! after getting up at my normal 6:30 to let the dog out and back in of course, but went back to bed). It was New Years Day. I went over to A's for New Year's eve, and the kids stayed up to watch the ball drop on TV. This was the first time they stayed up for New Year's Eve. Then I tucked them into their beds at A's house and headed home. Of course I ended up staying up until 2:30am reading, so I did not actually catch up on any sleep, sheesh!!
I am looking fr\orward tom this new year. I have many unfinished or partially finished goals from the last couple of years, and I will continue working on them. The three biggies I hope to continue this year are getting healthier physically, getting healthier spiritually, and getting healthier financially. Three facets of "wealth" in helping to transform my life.
Three primary focuses for the physical aspect: exercising 5 days a week needs to start happening again; eating more vegetables and fruit and less processed carbohydrates, and being more conscientious with food and snack choices (broth or soup for a snack instead of cookies or a bowl of cereal; drinking ample amounts of water; drinking hot tea between meals instead of immediately reaching for something to chew on; chewing gum when I really need the sensation of chewing; planning my meals beforehand so that I know I am eating a well balanced, nutrient dense meal, instead of throwing whatever together at the last minute).
Three primary focuses for the spiritual aspect: meditating at least 15 minutes a day; teaching my children about and living life as a prayer (being aware that everything I do can be an act of prayer--a way of communicating with and connecting to the Divine); and using self-hypnosis to actively work on emotional/mental blockages and to transform negative thinking patterns and habits.
Three primary focuses for the financial aspect: Making a reasonable budget based on actual spending needs and committing to it fully; Getting the day care business underway and being very reasonable with the budget; and putting some time and effort into the two business I have underway--finish my hypnosis training and get certified so I can make and sell some hypnosis MP3 and CD's, and work on my Ambit business, which my brother is law is making a six figure income from after only 2 years of being an independent consultant, so I know the company is honest, the service is good, and it is a great way to help others make money while helping their friends and family save money on electricity. I just need to find the time to put into building my business to bring in more income.
So three focus areas for my continued life transformation of my life. May 2012 bring blessings to you from unexpected places. And may you be open to being transformed!!
Sunday, December 25, 2011
Merry Christmas....
May you all be blessed this day with the amazing wonder of the first Christmas which brought the greatest energy of the most high God into human form, to walk among us, be vulnerable, and live with us as we are. May you know this day that YOU are so important and wondrous that Christ came in human form to live with us, teach us, eat with us, laugh with us, cry with us, and just be with YOU in general.
May the joy of sharing gifts, sharing food, sharing time and laughter and tears be s gift that lifts your hearts, minds, and spirits high.
My pepperoni loving son was excited to see that Santa had put a huge pepperoni stick in his stocking "OH MY GOSH!!! Santa gave me pepperoni!!" That was Josiah. Gonzo was so happy to open the only thing he asked for--a Bop It game, and has been having fun playing with it. We spent the night at A's house and Santa visited us there. My Mom and step dad as well as my Dad and my brother all came over for Christmas Breakfast and to see the present opening. Everyone is always amazing at how calm my kids are and how you have to keep encouraging them to open gifts,a s they have no problem stopping for long periods of time to play with what they have opened. Later (if I can get the kids away from their other gifts) we are supposed to meet my sister Sharon and her kids at dynamite hill with their new sleds to go sledding. Then we go over to her house for Christmas dinner. We are bringing a turkey, which is roasting in the oven. A will probably bring it directly to the house if I take the kids sledding because A is not fond of sledding. So it works alright.
I hope everyone is having a wonderful and amazing Christmas day!!
May the joy of sharing gifts, sharing food, sharing time and laughter and tears be s gift that lifts your hearts, minds, and spirits high.
My pepperoni loving son was excited to see that Santa had put a huge pepperoni stick in his stocking "OH MY GOSH!!! Santa gave me pepperoni!!" That was Josiah. Gonzo was so happy to open the only thing he asked for--a Bop It game, and has been having fun playing with it. We spent the night at A's house and Santa visited us there. My Mom and step dad as well as my Dad and my brother all came over for Christmas Breakfast and to see the present opening. Everyone is always amazing at how calm my kids are and how you have to keep encouraging them to open gifts,a s they have no problem stopping for long periods of time to play with what they have opened. Later (if I can get the kids away from their other gifts) we are supposed to meet my sister Sharon and her kids at dynamite hill with their new sleds to go sledding. Then we go over to her house for Christmas dinner. We are bringing a turkey, which is roasting in the oven. A will probably bring it directly to the house if I take the kids sledding because A is not fond of sledding. So it works alright.
I hope everyone is having a wonderful and amazing Christmas day!!
Wednesday, December 21, 2011
Gingerbread men and Chirtmas fun.....
So, I know I have been on here quite a bit lately talking about the ups and the downs of raising children with special needs, or rather more accurately, dealing with a world still struggling to accept all people as they are, no matter what their abilities, behavioral/social challenges, or medical status. So I have not posted much about our Christmas preparations (Sorry for the lack of pictures, I have not emptied my camera as I can't find the cord to do so, but some pics will be coming soon)....
A couple of weeks ago we put up some outdoor lights and started our nightly advent calendar, which has a great piece of chocolate behind each door. and one of the things that I greatly appreciate about my children is that they do not try to sneak another candy out of one of the other little windows, the thought never crossed their mind. They love that nightly ritual of finding the right number, opening the little door, reading the words behind the door, and pulling out that morsel of chocolate to unwrap and enjoy. YUM!
Last weekend I tried a few different cookie recipes--mainly trying to find both a sugar cookie and a gingerbread cookie recipe that we like the flavor and that are easy to work with. I found a wonderful tasting sugar cookie recipe, and if I do the ball and flatten method they are great--very easy and quick, but cutting them with cookie cutters was a bit more difficult, so a LOT of in and out of the fridge to firm up the dough. BUT they did make great shapes, held their shape well, and were the best tasting sugar cookie I have had. So I will make it again.
Then I found the best light tasting gingerbread cookie recipe (while I like traditional gingerbread, with dark molasses, the kids are not fond of the flavor). This recipe for gingerbread men is perfect! It has a nice light ginger flavor, it forms a great dough ball and is very easy to roll out, cut with cookie cutters, and transfer. I made a dozen and half cookies this weekend (which we all had a blast decorating), and they were all gone by Monday afternoon.
The icing I used for us to decorate with came out beautiful. It was another recipe I found on http://www.allrecipes.com/ and was shiny, beautiful icing that was easy to work with and dried shiny...and it worked great on both the sugar cookies and the gingerbread men. Yesterday the kids and I made another 3 dozen gingerbread men cookies (both gingerbread man and snowman shapes), as today is a cookie workshop for grades Pre-K thru 2nd grade at Josiah's school. So we signed up to send in a couple dozen cookies to decorate. And at 10:00 I will take the little girl I babysit up to school to join the festivities of cookie decorating.
This weekend we also put up our tree!! Gonzo had a great time decorating. Josiah however was not keen on it, he hung a couple of ornaments, but was not very interested in it really. We also put up the tree at A's house. Again Gonzo was excited to help, and Josiah was not really interested, but did put on a couple of ornaments.
I have wrapped most of our Christmas gifts, which is a new record for me, usually i have at least half of the gifts still to wrap on Christmas eve, which means short night. As we will be visiting A's family the 23rd and 24th, and making the 5 hour drive on on Christmas Eve, I did not want a lot of wrapping on top of tat, we need rest before the busy and long day that Christmas often is. We will be at A's house for the overnight so the kids will wake up there Christmas morning. While I love having Christmas morning at home, it is A's turn. It will be fun.
I hope you all are having a wonderful Holiday season. Happy Hanukkah to all those who have begun celebrating this wondrous 8-day holiday. And Merry Christmas to all who are enjoying advent and preparing for the celebration of Christ's birth. And Happy holidays to all others who are celebrating Kwanzaa, Yule, Solstice (TODAY), and all other holiday traditions surrounding this festive time of year!!
A couple of weeks ago we put up some outdoor lights and started our nightly advent calendar, which has a great piece of chocolate behind each door. and one of the things that I greatly appreciate about my children is that they do not try to sneak another candy out of one of the other little windows, the thought never crossed their mind. They love that nightly ritual of finding the right number, opening the little door, reading the words behind the door, and pulling out that morsel of chocolate to unwrap and enjoy. YUM!
Last weekend I tried a few different cookie recipes--mainly trying to find both a sugar cookie and a gingerbread cookie recipe that we like the flavor and that are easy to work with. I found a wonderful tasting sugar cookie recipe, and if I do the ball and flatten method they are great--very easy and quick, but cutting them with cookie cutters was a bit more difficult, so a LOT of in and out of the fridge to firm up the dough. BUT they did make great shapes, held their shape well, and were the best tasting sugar cookie I have had. So I will make it again.
Then I found the best light tasting gingerbread cookie recipe (while I like traditional gingerbread, with dark molasses, the kids are not fond of the flavor). This recipe for gingerbread men is perfect! It has a nice light ginger flavor, it forms a great dough ball and is very easy to roll out, cut with cookie cutters, and transfer. I made a dozen and half cookies this weekend (which we all had a blast decorating), and they were all gone by Monday afternoon.
The icing I used for us to decorate with came out beautiful. It was another recipe I found on http://www.allrecipes.com/ and was shiny, beautiful icing that was easy to work with and dried shiny...and it worked great on both the sugar cookies and the gingerbread men. Yesterday the kids and I made another 3 dozen gingerbread men cookies (both gingerbread man and snowman shapes), as today is a cookie workshop for grades Pre-K thru 2nd grade at Josiah's school. So we signed up to send in a couple dozen cookies to decorate. And at 10:00 I will take the little girl I babysit up to school to join the festivities of cookie decorating.
This weekend we also put up our tree!! Gonzo had a great time decorating. Josiah however was not keen on it, he hung a couple of ornaments, but was not very interested in it really. We also put up the tree at A's house. Again Gonzo was excited to help, and Josiah was not really interested, but did put on a couple of ornaments.
I have wrapped most of our Christmas gifts, which is a new record for me, usually i have at least half of the gifts still to wrap on Christmas eve, which means short night. As we will be visiting A's family the 23rd and 24th, and making the 5 hour drive on on Christmas Eve, I did not want a lot of wrapping on top of tat, we need rest before the busy and long day that Christmas often is. We will be at A's house for the overnight so the kids will wake up there Christmas morning. While I love having Christmas morning at home, it is A's turn. It will be fun.
I hope you all are having a wonderful Holiday season. Happy Hanukkah to all those who have begun celebrating this wondrous 8-day holiday. And Merry Christmas to all who are enjoying advent and preparing for the celebration of Christ's birth. And Happy holidays to all others who are celebrating Kwanzaa, Yule, Solstice (TODAY), and all other holiday traditions surrounding this festive time of year!!
Tuesday, December 20, 2011
A Dentist!?!!? Elves make Toys!!....
Okay, so this has nothing to do with Rudolf or the elf that wants to be a dentist, but it does have to do with a dentist, so I had to have a more seasonal title..
SO....
I believe I have posted before about the saga we have had trying to find someone to work on Josiah's teeth (I looked back through and can't figure out what post it was in). So, I will just do a quick summary.
One of the challenging things about damage to the brain which happens in CP is that for many people the teeth do not form correctly. When Josiah's teeth came in there were holes in the enamel in various teeth on both sides, and all of the teeth on the left side were visibly thinner and smaller than the ones on the right side of his mouth. We consulted our doctor and he was not concerned, and we also consulted a dentist. There was only one dentist in the area where we were that both accepted medicaid AND took kids under 5 years old. Our thought was that sealing them would help they avoid decay as the holes where decay can get a foothold were already there. BUT medicaid does not cover tooth sealing, and as we were barely surviving financially so could not pay the high prices for tooth sealing. We were fastidious about brushing his teeth and making sure that those holes in his teeth were kept clean.
But even the best of brushing can not keep things clean entirely, and in the summer of 2010 I noticed a small spot of brown in one of the holes. As we had moved up here, we found the only pediatric dentist who took medicaid and young children here. . I called them first and explained his medical history, as some dentists (and heck, some doctors) can be hesitant to work with a child with his medical history. They said they see kinds with all sorts of special needs. So we made an appointment. Gonzo got his cleaning and check up done first. And then Josiah's turn came, and they decided at the last minute that to even clean his teeth they needed clearance from a cardiologist and a pulmonary doctor. As he had been cleared by cardiology as a baby before I even adopted him, I did not have a cardiologist, nor did I have or know where to get, the paperwork showing that he had been released from cardiology. So began a six month saga of getting a referral to and an appointment with a pediatric cardiologist (with chest x-rays and an EKG done beforehand. Due to a snowstorm in late November 2010, they canceled his appointment and rescheduled him for January. So finally in January we saw the cardiologist and he was pronounced to have a healthy heart that needed no followup or any special treatment for dental work.
So we submitted this to the dentist the very same day. Then we were told his pulmonary clearance was too old for them to be able to do a cleaning. So I called this pulmonary doctor to get a new clearance letter, and was told it had been too long since his last appointment and we would have to come in again. So they scheduled us for 3 weeks later. On the 2 1/2 hour drive to see the pulmonary doctor, my car broke down on the side of the highway. We missed the appointment, but thanks to a very helpful police man were able to get the car running well enough to limp it off the highway and get it to a shop where it was fixed. OF course I had to rely on family to help as I did not have the funds necessary, so my Mom and step father put some money on my green dot card (handy little thing that is). Josiah and I had a long lunch at subway that day while waiting for the car to be ready to drive back home (the car died completely about 2 1/2 weeks later). So we scheduled another appointment, the earliest they had was in March. About a week before the appointment the office called to say that his pulmonary doctor who had been following him since he first PICU emergency was leaving the practice and would I like to reschedule with one of the other doctors, which would be an appointment for late April. So I declined and decided to find a closer one. Josiah's pediatrician referred us to a great pulmonary group at a closer children's hospital (only 1 hr and 45 minutes way). The appointment was for mid-April. So come mid-April, we got in to see the new pulmonary doc, and he was great. We got the specific clearances that the dentist needed to both do regular cleanings and sedated dental work. We took those to the dentist office, and they had to check with the doctor before scheduling a cleaning/checkup.
but this time that little spot of brown had grown and three other teeth with holes had started to show brown spots, and in the areas of thin enamel there was some discoloration starting. So finally in early June he had a cleaning and x-rays, and a check up, nearly a year after this saga began. 14 of his teeth are affected, with that first one I mentioned being the worst one (that one cracked and broke in early July, but as it did not seem to be causing him discomfort the doctor said it would be fine until surgery. So we were put on the waiting list for dental surgery. I got a call from the person that handles it and she said she needed more medical records from his doctor as the surgery center was not sure they could handle his medical issues. So that was all sent in. I told her to tell me now if they are not able to do it, as we had waited long ewnough and if they couldn't do it, I was willign to drive out to the dental school attached to a children's hospital 5 hours away as I knew that they could be comfortable with his medical history and current issues. They got back to me in a few days and said the surgery center and anesthesiologist had reviewed his history and were comfortable doign the surgery. So we were all set and just had to wait for a space to open up.
In August I get a call that he is scheduled for September 14th. So we start preparing for that, hada heck of a tiem scheduling his pre-op, but got it all set up. And then two days before the surgery he developed a fever and stuffy/runny nose and a cough. So he could not go under anesthtesia. So he was again put on the waiting list. I got a call in mid-November that he could come in either december 8th or 22nd for the surgery as they had openings on both days. So, as his concert was the 8th and he was so excited about the concert, we chose the 22nd as his surgery day. We had his pre-op done, got everythign all arranged, and even notified the school. He had his intake phone call with the nurse on Friday, and everythign was all set for this coming Thursday. A and I both took the day off, and were ready to roll. Josiah had been complainign of tooth pain since Saturday, so we have been rinsing with salt water a few times a day, and I was looking forward to him finally getting these teeth fixed.
Then on Monday morning I get a phone call that the anestesiologist changed their mind at the last minute and now is not comfortable working with josiah's medical issues. So they can not do the surgery. 18 months of jumping through hoops, getting clearances, being told that they can do it, and THIS last minute decision NOT to do it. At least they are calling in a prescription for amoxicillin to deal with the infection that appears to be developing in Josiah's tooth. But that does not solve the problem. Now we have to start over. Now Josiah has to wait even longer with his teeth getting continually worse. Even with good brushing and trying to make sure he rinses with water after eating sweets or crackers that stick to his teeth, his teeth are still slowly deteriorating. For a kids with a great smile and such a normally happy disposition (except at school for soem reason...) it is horrible to make him wiat any longer. So, I am a bit frustrated....well much, MUCH more than a bit.....
I just have to breathe and roll with it, and doctors, dentists and teachers are definitely not all cut from the soem cloth. Some are in those positions becasue they want to help all people, and others only want ot work with the easy ones, and shove the rest of the children aside. Good old Nazi ideals at work, elimiate all that do not fit the mold. Lately, I feel like we are dealing with more than our fair share of inflexible and intolerant professionals when it comes to Josiah.....
Well, maybe with the anitbiotics and not the surgery, Josiah will have a better Christmas. He always has a hard time for a few days after anestesia....So Merry Christmas....
SO....
I believe I have posted before about the saga we have had trying to find someone to work on Josiah's teeth (I looked back through and can't figure out what post it was in). So, I will just do a quick summary.
One of the challenging things about damage to the brain which happens in CP is that for many people the teeth do not form correctly. When Josiah's teeth came in there were holes in the enamel in various teeth on both sides, and all of the teeth on the left side were visibly thinner and smaller than the ones on the right side of his mouth. We consulted our doctor and he was not concerned, and we also consulted a dentist. There was only one dentist in the area where we were that both accepted medicaid AND took kids under 5 years old. Our thought was that sealing them would help they avoid decay as the holes where decay can get a foothold were already there. BUT medicaid does not cover tooth sealing, and as we were barely surviving financially so could not pay the high prices for tooth sealing. We were fastidious about brushing his teeth and making sure that those holes in his teeth were kept clean.
But even the best of brushing can not keep things clean entirely, and in the summer of 2010 I noticed a small spot of brown in one of the holes. As we had moved up here, we found the only pediatric dentist who took medicaid and young children here. . I called them first and explained his medical history, as some dentists (and heck, some doctors) can be hesitant to work with a child with his medical history. They said they see kinds with all sorts of special needs. So we made an appointment. Gonzo got his cleaning and check up done first. And then Josiah's turn came, and they decided at the last minute that to even clean his teeth they needed clearance from a cardiologist and a pulmonary doctor. As he had been cleared by cardiology as a baby before I even adopted him, I did not have a cardiologist, nor did I have or know where to get, the paperwork showing that he had been released from cardiology. So began a six month saga of getting a referral to and an appointment with a pediatric cardiologist (with chest x-rays and an EKG done beforehand. Due to a snowstorm in late November 2010, they canceled his appointment and rescheduled him for January. So finally in January we saw the cardiologist and he was pronounced to have a healthy heart that needed no followup or any special treatment for dental work.
So we submitted this to the dentist the very same day. Then we were told his pulmonary clearance was too old for them to be able to do a cleaning. So I called this pulmonary doctor to get a new clearance letter, and was told it had been too long since his last appointment and we would have to come in again. So they scheduled us for 3 weeks later. On the 2 1/2 hour drive to see the pulmonary doctor, my car broke down on the side of the highway. We missed the appointment, but thanks to a very helpful police man were able to get the car running well enough to limp it off the highway and get it to a shop where it was fixed. OF course I had to rely on family to help as I did not have the funds necessary, so my Mom and step father put some money on my green dot card (handy little thing that is). Josiah and I had a long lunch at subway that day while waiting for the car to be ready to drive back home (the car died completely about 2 1/2 weeks later). So we scheduled another appointment, the earliest they had was in March. About a week before the appointment the office called to say that his pulmonary doctor who had been following him since he first PICU emergency was leaving the practice and would I like to reschedule with one of the other doctors, which would be an appointment for late April. So I declined and decided to find a closer one. Josiah's pediatrician referred us to a great pulmonary group at a closer children's hospital (only 1 hr and 45 minutes way). The appointment was for mid-April. So come mid-April, we got in to see the new pulmonary doc, and he was great. We got the specific clearances that the dentist needed to both do regular cleanings and sedated dental work. We took those to the dentist office, and they had to check with the doctor before scheduling a cleaning/checkup.
but this time that little spot of brown had grown and three other teeth with holes had started to show brown spots, and in the areas of thin enamel there was some discoloration starting. So finally in early June he had a cleaning and x-rays, and a check up, nearly a year after this saga began. 14 of his teeth are affected, with that first one I mentioned being the worst one (that one cracked and broke in early July, but as it did not seem to be causing him discomfort the doctor said it would be fine until surgery. So we were put on the waiting list for dental surgery. I got a call from the person that handles it and she said she needed more medical records from his doctor as the surgery center was not sure they could handle his medical issues. So that was all sent in. I told her to tell me now if they are not able to do it, as we had waited long ewnough and if they couldn't do it, I was willign to drive out to the dental school attached to a children's hospital 5 hours away as I knew that they could be comfortable with his medical history and current issues. They got back to me in a few days and said the surgery center and anesthesiologist had reviewed his history and were comfortable doign the surgery. So we were all set and just had to wait for a space to open up.
In August I get a call that he is scheduled for September 14th. So we start preparing for that, hada heck of a tiem scheduling his pre-op, but got it all set up. And then two days before the surgery he developed a fever and stuffy/runny nose and a cough. So he could not go under anesthtesia. So he was again put on the waiting list. I got a call in mid-November that he could come in either december 8th or 22nd for the surgery as they had openings on both days. So, as his concert was the 8th and he was so excited about the concert, we chose the 22nd as his surgery day. We had his pre-op done, got everythign all arranged, and even notified the school. He had his intake phone call with the nurse on Friday, and everythign was all set for this coming Thursday. A and I both took the day off, and were ready to roll. Josiah had been complainign of tooth pain since Saturday, so we have been rinsing with salt water a few times a day, and I was looking forward to him finally getting these teeth fixed.
Then on Monday morning I get a phone call that the anestesiologist changed their mind at the last minute and now is not comfortable working with josiah's medical issues. So they can not do the surgery. 18 months of jumping through hoops, getting clearances, being told that they can do it, and THIS last minute decision NOT to do it. At least they are calling in a prescription for amoxicillin to deal with the infection that appears to be developing in Josiah's tooth. But that does not solve the problem. Now we have to start over. Now Josiah has to wait even longer with his teeth getting continually worse. Even with good brushing and trying to make sure he rinses with water after eating sweets or crackers that stick to his teeth, his teeth are still slowly deteriorating. For a kids with a great smile and such a normally happy disposition (except at school for soem reason...) it is horrible to make him wiat any longer. So, I am a bit frustrated....well much, MUCH more than a bit.....
I just have to breathe and roll with it, and doctors, dentists and teachers are definitely not all cut from the soem cloth. Some are in those positions becasue they want to help all people, and others only want ot work with the easy ones, and shove the rest of the children aside. Good old Nazi ideals at work, elimiate all that do not fit the mold. Lately, I feel like we are dealing with more than our fair share of inflexible and intolerant professionals when it comes to Josiah.....
Well, maybe with the anitbiotics and not the surgery, Josiah will have a better Christmas. He always has a hard time for a few days after anestesia....So Merry Christmas....
Subscribe to:
Posts (Atom)