Every day there's a tension as to whether Holland will get in his van for school. Even after it's driven off, I still am worried that the driver will come back to my driveway and say "there's no way I'm drivin' this kid 45 minutes!" He's refused to get in the van three times. And two of those times have been after I gave him a particular medication the night before. It's a catch-22 with his sleeping. He takes something to help him sleep, but it doesn't keep him asleep long enough. Well, long enough for me. He can probably survive on the sleep he's getting, but since it's so unsafe for him to be wandering around the house in the early morning, it would be best for all of us if he could stay asleep until 7 a.m. That's where the second med came into play. The first time we reintroduced it, I gave him half the dose he had before. I had so much trouble waking him up to get ready for school. He was so cranky and obviously still had the med in his system. He refused to get in the van (this is the time where the driver threatened to call the police because he was so overwhelmed with what to do).
So a few days ago, the psychiatrist suggested trying it again because he's not staying asleep long enough. Same thing happened the next morning. He's overly cranky, mean to everyone and causing problems when I'm dropping Romania at his bus stop. When we get home, the van is already in the driveway and he's upset because he's too tired and wants me to drive him in. I tell him that's not part of the day's plan. That he has to ride the van if he wants the reward of me picking him up after 10 successful days going in. Well, I found out that part of the reason he was so upset is that one of the staff had scheduled two different times to come for a home visit and had to cancel. The first time was bearable, the second was not. So, he was tired and on top of that very upset that this person wasn't coming like she had promised twice.
So he ended up staying home on Tuesday. Just flat out refused to get in the van. I had to cancel the entire day's plans of errands and things with Egypt. I was so frustrated. The whole point of having him at this day treatment program was to get the help he needed for his behavior. So far, they've seen very little of what I see at home. They are probably still wondering why I fought so hard to get him out there. They probably think I'M the nut job for not just putting him in a regular educational setting. Well, I take that back. They saw a glimpse of that last week when I came to school for a meeting and he wanted to come home with me. He got outside the locked gate and clung to my van for dear life. Then when I called my mom to tell her I would be late picking up Egypt, he crawled on top of the van and jumped up and down trying to get me to change my mind. I let 5 staff just stand around the van to make sure he wasn't going to hurt himself. But I waited it out (they asked how long I wanted to wait. Usually I don't get that benefit because it's jut me against him all other confrontations. But this time with so many adults around, tag-teaming was a lot easier.) It took him 45 minutes to get off my van and come inside and another 20 to 30 to be able to be calm enough to talk and walk off his anxiety. Turns out his speech teacher is a really great person to have around. He had us walking and talking and within 5 minutes, Holland was taking deep, relaxing breaths that he'd been holding in for over an hour.
So the stress of getting Holland to school is just wearing on me. It also is really hard to see Romania upset every day that I take him to the bus stop. He's in tears most days and it's so sad that there's so much stress on his little 9 year-old body. Part of me just wants to keep him home so he can get some much needed attention. Then Egypt says how much she wants to go to school with Romania. "I want to ride the bus and have the teacher teach me things and I want friends." I told her that right now it was very important that I be able to teach her the things God wants me to teach her and she can't learn that in public school. She paused for a minute and then said, "Can I go to school some of the time and then come home and you teach me the God things?"
Oh, if were only that easy.
Thursday, December 9, 2010
Monday, December 6, 2010
Love you, Uncle Pete
My Uncle Pete died on December 4th. He had scheduled surgery for his knee and found out through pre-op exams that he had had several heart attacks. The doctors decided he wasn't in any shape to have knee surgery and his heart needed taken care of first. He had quadruple bypass surgery two days before Thanksgiving. There were several complications. He had to go back into surgery after they discovered internal bleeding. His lungs never fully worked to capacity because he was a smoker and had emphysema. After more than a week in ICU, his doctors moved him to his own room and then only two days later sent him home.
His wife had to call 911 the following morning because he was having trouble breathing. After a short stay at our local hospital, he was sent home with more medication and an oxygen tank. My parents had dinner with him and his wife and my mom stayed over. Then Saturday morning when my dad came over to pick up my mom for a Christmas Tea we had planned, there was an ambulance and firetruck there. My mom had seen him when she woke up. She went upstairs to take a shower and 15 minutes later my aunt saw him, but he had stopped breathing. The paramedics worked on him for 15 minutes, but it was obvious he was gone.
We are all grieving this loss. My kids had such fun going over there for BBQ's and s'mores in the fire pit. They climbed trees, played ball and soccer, and just ran around. But in the wise words of a 6 year-old, she reminded me that even though gramma was sad, Uncle Pete was in heaven with Jesus and he was happy.
His wife had to call 911 the following morning because he was having trouble breathing. After a short stay at our local hospital, he was sent home with more medication and an oxygen tank. My parents had dinner with him and his wife and my mom stayed over. Then Saturday morning when my dad came over to pick up my mom for a Christmas Tea we had planned, there was an ambulance and firetruck there. My mom had seen him when she woke up. She went upstairs to take a shower and 15 minutes later my aunt saw him, but he had stopped breathing. The paramedics worked on him for 15 minutes, but it was obvious he was gone.
We are all grieving this loss. My kids had such fun going over there for BBQ's and s'mores in the fire pit. They climbed trees, played ball and soccer, and just ran around. But in the wise words of a 6 year-old, she reminded me that even though gramma was sad, Uncle Pete was in heaven with Jesus and he was happy.
Sunday, December 5, 2010
Post mix-up
For some reason, the post I just wrote about Holland's school update got posted before the post about the Shutterfly cards. Probably because I started that post back on November 19th! Well, at least I know that my computer can keep track of when I write things, even if I can't. Maybe it can help me find where I've hidden all my Christmas presents this year!
Monday, November 29, 2010
Shutterfly Cards
About a month ago I got a Groupon for a photobook from Shutterfly. It cost me $10 for a 20 page book worth $30. I decided to make a book for Super Hero for Christmas. It took me awhile because I got to choose all the backgrounds, borders, wording and fonts. But I am so happy with the results. They also ship very quickly. The entire book was printed and arrived in my mailbox in a week. So you still have time to order something for Christmas! They are having a sale right now - 20% off all holiday cards. Check it out here.
Yesterday we took the kids to Washington Park in Portland and I took pictures in the Rose Test Garden. Even though the flowers are not blooming, it's still such an amazing place. The kids had a blast running around, helping with poses and exploring the gardens. I've been impressed with Shutterfly's Christmas card selection, and will probably end up using a design from here.. My favorites are the cards with multiple photo spaces. So many memories to choose from throughout the year!
The kids are so excited to see the results of our photo session. I love the quality of Shutterfly so much, that it makes me want to throw a party, just to use their invitations!
Yesterday we took the kids to Washington Park in Portland and I took pictures in the Rose Test Garden. Even though the flowers are not blooming, it's still such an amazing place. The kids had a blast running around, helping with poses and exploring the gardens. I've been impressed with Shutterfly's Christmas card selection, and will probably end up using a design from here.. My favorites are the cards with multiple photo spaces. So many memories to choose from throughout the year!
The kids are so excited to see the results of our photo session. I love the quality of Shutterfly so much, that it makes me want to throw a party, just to use their invitations!
Wednesday, November 17, 2010
The Big Update
So much has happened in the last month. It's no wonder I haven't been blogging about my ever so interesting life. Holland got into the school I was hoping for. We had several meetings and they decided it was a good fit.
We've had several mishaps with transportation (first day he was supposed to start, there wasn't a ride for him; and later on his driver told him she was going to call the police to get him out of the van because he wouldn't get out). Let's just say that I've never seen the school district react so strongly, so quickly and so appropriately. For the next two days right after this happened, they had a substitute driver. The director of Oregon City schools transportation went down to the office of the contracted student transport services and discussed the problem. They then switched the driver for Holland and the other boy who rides with him. Now we have a trained driver who has actually worked with special needs kids before.
There have also been a couple problems with getting him to stay at school. For the most part he's been fine and seems to be adjusting well. He gets lots of freedom for breaks and allowing him to cool down, but the hardest part is just getting him there. The program is a day treatment program so there are counselors and specially trained staff to deal with his emotional and academic learning needs. Within the first two weeks, two of the staffers had come out to visit Holland at home. They even both climbed his 4-story tree fort! This next week, his support staff Mary is coming out to work on family interactions. Romania will be home from school for a community service project. So she will be able to work with all three kids.
I will try to be more consistent with posting updates about all that has been happening. My uncle just died yesterday morning and things have been happening so fast all around me.
We've had several mishaps with transportation (first day he was supposed to start, there wasn't a ride for him; and later on his driver told him she was going to call the police to get him out of the van because he wouldn't get out). Let's just say that I've never seen the school district react so strongly, so quickly and so appropriately. For the next two days right after this happened, they had a substitute driver. The director of Oregon City schools transportation went down to the office of the contracted student transport services and discussed the problem. They then switched the driver for Holland and the other boy who rides with him. Now we have a trained driver who has actually worked with special needs kids before.
There have also been a couple problems with getting him to stay at school. For the most part he's been fine and seems to be adjusting well. He gets lots of freedom for breaks and allowing him to cool down, but the hardest part is just getting him there. The program is a day treatment program so there are counselors and specially trained staff to deal with his emotional and academic learning needs. Within the first two weeks, two of the staffers had come out to visit Holland at home. They even both climbed his 4-story tree fort! This next week, his support staff Mary is coming out to work on family interactions. Romania will be home from school for a community service project. So she will be able to work with all three kids.
I will try to be more consistent with posting updates about all that has been happening. My uncle just died yesterday morning and things have been happening so fast all around me.
Monday, October 4, 2010
The Big IEP Meeting
Finally had the IEP placement meeting for Holland last week. I haven't been able to update because I was sick last weekend. And life just moves too fast sometimes! The woman from the parent advocate group was there but wasn't able to stay for the whole meeting. Five minutes after she left, the school rep says, "Ok. Let's talk about placement." Arrrggghghgh! She was helpful, though. She wrote suggestions down on the IEP draft for me to bring up, or request to be included in the IEP. At one point, the school psychologist was going over behavior goals. One of the items said he would "use self-management techniques when frustrated instead of damaging school property 75% of the time." My parent advocate then asks, "So, it's okay to damage property 25% of the time, then?" I wanted to laugh out loud! Her point was that if the goal is written as anything other than 100%, he would become confused if sometimes it was okay to damage property and other times it wasn't. The district guy wants to see the paper and says "I don't think that was the intention of the goal." But she had a very good point and it made me laugh.
They've put in a request to a place in Beaverton called Lifeworks. It will be a 40 minute bus ride. That's just awful. There is nothing closer than is appropriate. At this school there will be the teaching staff as well as medical professionals available for his needs. I haven't figured out how I'm going to tell him. I just know it's not going to go well. Maybe they'll have a computer for him to take apart!
They've put in a request to a place in Beaverton called Lifeworks. It will be a 40 minute bus ride. That's just awful. There is nothing closer than is appropriate. At this school there will be the teaching staff as well as medical professionals available for his needs. I haven't figured out how I'm going to tell him. I just know it's not going to go well. Maybe they'll have a computer for him to take apart!
Thursday, September 16, 2010
This is New
Real quick update: saw the new doctor Monday because Wednesday had an appointment for developmental disability services. This doctor isn't changing his diagnosis (and really only a developmental ped or psychologist can do that), but she says he's showing lots of signs of Asperger's Syndrome. I've actually heard this before, but we've never pursued it. We've always treated the symptoms as bipolar and she'll continue to do that. Even if he does have Asperger's, there can still be underlying issues like a mood disorder. Interestingly, if we can't prove his developmental issues are related to fetal alcohol spectrum disorder or some other mental impairment, we won't get any assistance. Bipolar doesn't qualify him at all, but Asperger's would.
Now I'm doing more research on Asperger's and trying to view his impairment from this angle. It's tough trying to figure out if his behavior is from a mood disorder or a neurological impairment.
Now I'm doing more research on Asperger's and trying to view his impairment from this angle. It's tough trying to figure out if his behavior is from a mood disorder or a neurological impairment.
Wednesday, August 25, 2010
Thursday, August 12, 2010
Shriners: Part III
How many updates can a person have on a situation? Turns out a lot since this process is so long and tedious. I'll get right to it. Save you the trouble of having to read through all the boring details. Holland didn't get accepted to Shriners. So very disappointed.
I took Egypt and Romania over to my mom's house the night before because we had to leave the house by 7 and I didn't want her to have to get up that early. It took under an hour to get there, but glad I allowed myself the extra time for parking and navigating the building. It's so confusing up on "Pill Hill".
I had most of his records sent over before the appointment but found out the day before that the neurosurgeon's office had not sent over any of his film. It would have been nice after getting all the requests for records to be sent that they would have said "by the way, we won't be sending over any of your x-rays, MRI's, or CAT scans so be sure to request those through the records department." Silly me thought that the doctor that actually ordered all those tests would have them included in his file. So I had to pile the kids in the car and drive 45 minutes up to Emanuel, walk in a big circle to finally find the film library. The woman that I spoke to was so nice and had everything ready for me.
After filling out some more forms, we were given a pager that would beep when they were ready for us. I knew that Holland was anxious because he wouldn't go play any video games. We didn't wait very long and were taken back to get weighed, measured and blood pressure taken. Once in the room, more questions, more information entered into a computer and then finally a doctor came in. He did a quick once-over, looking at how he walked and looked briefly at his back. Then the big-wig doctor came in and asked "what can we do for you?" Well, isn't it obvious? I'm here to get help for my son with spina bifida and encopresis problems. But apparently you have to be very specific with what you ask for. After doing some x-rays on his feet because of what he thought was bone sticking out of his feet, we were told that there was nothing they could do to help us. My request for orthotics was a waste of money and to just go buy something at the grocery store to put in his shoes. I know from the inserts he had before that it helped with his leg pain. His ankles are so weak, that they turn inward. Not only that, he's pigeon-toed and has no arch.
But I honestly believe that because I didn't come right out and ask for physical therapy or occupational therapy, they didn't offer it. They knew from our medical treatment history that we had done that. We had also tried exercises at home, but he's in so much pain, I can't do them with him. I really don't understand why he wouldn't be a good candidate for treatment. But I know they are used to seeing very disabled kids on a daily basis. Why else would two different people say to me "oh look, he can walk!"? I guess because he's not crippled, we really can't benefit from their services. Because everything is free, they only want the most severe cases for treatment. Which makes it very hard on me.
The last doctor that came in talked to me about the encopresis problems and the celiac. I think he just wanted to see how much I knew (which is a lot from doing this for 2 1/2 years). I found out from him that the C1 vertebrae that has a huge gap at the bottom of his spine, is the vertebrae that controls bladder and bowel functions. Okay. Sorry. But doesn't that just fit in with a spinal cord problem and shouldn't he be treated for this malformation? I didn't find out until the very end that there is another option for people suffering from constant bowel problems. And I'm talking constant. I've thrown out 5 pairs of underwear just this week (TMI, I know, but you get what you pay for). This doctor told me about some tube that's inserted and every two days or so, the person sits on the toilet and the tube gets emptied out automatically. Then there's no accidents because he gets cleaned out every couple of days. Why was this never brought up when I was talking to Mr. Big-Wig? When a kid has an obvious bowel problem that hasn't been cleared up with a tethered cord surgery, wouldn't it make sense that it's probably related to the spina bifida and NOT the celiac disease? I just don't understand what is going on. What is the plan here? For Holland to continue suffering? For me to clean out poopy underwear for the rest of my life?
Someone throw me a flashlight because there's no light at the end of this tunnel.
I took Egypt and Romania over to my mom's house the night before because we had to leave the house by 7 and I didn't want her to have to get up that early. It took under an hour to get there, but glad I allowed myself the extra time for parking and navigating the building. It's so confusing up on "Pill Hill".
I had most of his records sent over before the appointment but found out the day before that the neurosurgeon's office had not sent over any of his film. It would have been nice after getting all the requests for records to be sent that they would have said "by the way, we won't be sending over any of your x-rays, MRI's, or CAT scans so be sure to request those through the records department." Silly me thought that the doctor that actually ordered all those tests would have them included in his file. So I had to pile the kids in the car and drive 45 minutes up to Emanuel, walk in a big circle to finally find the film library. The woman that I spoke to was so nice and had everything ready for me.
After filling out some more forms, we were given a pager that would beep when they were ready for us. I knew that Holland was anxious because he wouldn't go play any video games. We didn't wait very long and were taken back to get weighed, measured and blood pressure taken. Once in the room, more questions, more information entered into a computer and then finally a doctor came in. He did a quick once-over, looking at how he walked and looked briefly at his back. Then the big-wig doctor came in and asked "what can we do for you?" Well, isn't it obvious? I'm here to get help for my son with spina bifida and encopresis problems. But apparently you have to be very specific with what you ask for. After doing some x-rays on his feet because of what he thought was bone sticking out of his feet, we were told that there was nothing they could do to help us. My request for orthotics was a waste of money and to just go buy something at the grocery store to put in his shoes. I know from the inserts he had before that it helped with his leg pain. His ankles are so weak, that they turn inward. Not only that, he's pigeon-toed and has no arch.
But I honestly believe that because I didn't come right out and ask for physical therapy or occupational therapy, they didn't offer it. They knew from our medical treatment history that we had done that. We had also tried exercises at home, but he's in so much pain, I can't do them with him. I really don't understand why he wouldn't be a good candidate for treatment. But I know they are used to seeing very disabled kids on a daily basis. Why else would two different people say to me "oh look, he can walk!"? I guess because he's not crippled, we really can't benefit from their services. Because everything is free, they only want the most severe cases for treatment. Which makes it very hard on me.
The last doctor that came in talked to me about the encopresis problems and the celiac. I think he just wanted to see how much I knew (which is a lot from doing this for 2 1/2 years). I found out from him that the C1 vertebrae that has a huge gap at the bottom of his spine, is the vertebrae that controls bladder and bowel functions. Okay. Sorry. But doesn't that just fit in with a spinal cord problem and shouldn't he be treated for this malformation? I didn't find out until the very end that there is another option for people suffering from constant bowel problems. And I'm talking constant. I've thrown out 5 pairs of underwear just this week (TMI, I know, but you get what you pay for). This doctor told me about some tube that's inserted and every two days or so, the person sits on the toilet and the tube gets emptied out automatically. Then there's no accidents because he gets cleaned out every couple of days. Why was this never brought up when I was talking to Mr. Big-Wig? When a kid has an obvious bowel problem that hasn't been cleared up with a tethered cord surgery, wouldn't it make sense that it's probably related to the spina bifida and NOT the celiac disease? I just don't understand what is going on. What is the plan here? For Holland to continue suffering? For me to clean out poopy underwear for the rest of my life?
Someone throw me a flashlight because there's no light at the end of this tunnel.
Friday, August 6, 2010
Another Day, Another Window
We've had two sessions with our new doctor for Holland. And I really like her. She's a nurse practitioner, but she has her Ph.D and she can prescribe meds as well as counsel. Hoping to get some bang for our buck. I gave her lots of paperwork on Holland and she was impressed with all that I brought (finally!, Someone who appreciates what I do!) At our second appointment, she had had time to look through everything and we were able to discuss med changes, what meds he'd been on and which ones I thought didn't work. We also talked about an ADHD med, but that will come later, if at all.
I had to email her for some counsel because Holland broke another window. This time my sister had come over every morning during this week for about 4 or 5 hours to help me clean, organize and work on Holland's angry outbursts. He had been told he couldn't play with friends due to prior behavior. When a neighbor girl came over to invite Egypt to come play in their sprinkler and he was told (repeatedly) that he couldn't go, he got physical with me. My sister ended up stepping in and basically after not being able to stop the violent behavior, we put him in his room and waited. Much of his belongings had been removed, but we couldn't remove his window and he threw a ceramic piece he had made into the window several times and punched a big hole in the back of his door (again). I wish he would have smashed the old computer in his room. Then I wouldn't have to deal with husband being mad that he had to replace another window. Which he didn't even want to do. I told him he needed to remove the glass because Holland was starting to pick pieces off and saving it for his spear to injure deer in our backyard. Our doctor said we could increase on of the meds he was on and that should help slow him down. Which sounds really awful when you just hear that. But after being hit, kicked, spit on, called names and yelled at, then having him break a window, can't say I'm complaining about the slowing down part.
I also have made many phone calls trying to find us more help. My insurance doesn't cover any kind of day treatment program and I doubt any in-home assistance. I have several calls out to county agencies seeing what we qualify for. Hoping we can get some respite in-home care because if this doesn't get better, I'm admitting myself into a hospital to be taken care of.
I had to email her for some counsel because Holland broke another window. This time my sister had come over every morning during this week for about 4 or 5 hours to help me clean, organize and work on Holland's angry outbursts. He had been told he couldn't play with friends due to prior behavior. When a neighbor girl came over to invite Egypt to come play in their sprinkler and he was told (repeatedly) that he couldn't go, he got physical with me. My sister ended up stepping in and basically after not being able to stop the violent behavior, we put him in his room and waited. Much of his belongings had been removed, but we couldn't remove his window and he threw a ceramic piece he had made into the window several times and punched a big hole in the back of his door (again). I wish he would have smashed the old computer in his room. Then I wouldn't have to deal with husband being mad that he had to replace another window. Which he didn't even want to do. I told him he needed to remove the glass because Holland was starting to pick pieces off and saving it for his spear to injure deer in our backyard. Our doctor said we could increase on of the meds he was on and that should help slow him down. Which sounds really awful when you just hear that. But after being hit, kicked, spit on, called names and yelled at, then having him break a window, can't say I'm complaining about the slowing down part.
I also have made many phone calls trying to find us more help. My insurance doesn't cover any kind of day treatment program and I doubt any in-home assistance. I have several calls out to county agencies seeing what we qualify for. Hoping we can get some respite in-home care because if this doesn't get better, I'm admitting myself into a hospital to be taken care of.
Friday, July 23, 2010
This Guy Needs a Review
And I'm just the person to give it to him. After two sessions with who was supposed to be the new psychiatrist treating Holland, I decided I AM a pretty good judge of character. I didn't really like him the first time, but people encouraged me to give it a second chance. Mostly because of the hospitalization issue, but also because we just don't have anyone helping us right now.
After the first appointment, I immediately made a second appointment so our interpreter would know her schedule. It was more than two weeks away. Then the major melt down happened and I didn't know what to do, so I called this guy's office hoping to either get some really good advice or an appointment sooner than our already scheduled one. The soonest they had was for a week later. She told me to "take care of the interpreter" for her. I didn't bother telling her that I wasn't going to get an interpreter. Super Hero had been taking so much time off from work to see Holland at the hospital, the first doctor's appointment, etc. I didn't feel he needed to go in with me (seeing as the then third appointment would also be with an interpreter and I didn't want to cancel that one). On Wednesday night when I left the hospital I spoke with the doctor and they wanted to keep him until Friday to be able to monitor his sleeping and the reduced med in the morning. So I was expecting to have him come home on Friday. Thursday morning (the day of the appointment I was to have with the psychiatrist), the hospital calls and says, "come get him." They had 5 new kids come in the night before between the ages of 9 and 11. They just didn't have the staff for that large a group of younger kids and Holland would be doing nothing productive for that time.
Big quandry here. I was supposed to drop my kids off at my mom's and drive up to Portland for this appointment. There was no way I could keep the appointment and pick up Holland from the hospital. I called the doctor's office and pleaded my case. I just couldn't make the appointment. Under the circumstances, would they not charge me for a late cancellation. No. Doctor's policy said I would be charged $130 for a canceled appointment. I couldn't believe it. They have no feelings. No empathy. I would understand it if I canceled and it wasn't an emergency. But I wasn't running off to the beach. So I emailed Super Hero and asked him if he could go to the meeting for me. No interpreter. Last minute change. We both thought a $25 copay sounded better than $130 for no services received. He came home with a bunch of paper work and items the doctor requested. Interestingly enough, he requested the discharge papers. Which he would have had, HAD HE WAITED FOR ME TO BE THERE. This guy is unbelievable.
So, now we're up to Thursday, yesterday. Scheduled appointment with the interpreter there. We arrived early. We waited 10 minutes past our appointment. No explanation. No - "doctor will be with you shortly." Nothing. Then when we get into his office, he starts directing everyone where to sit. Now first off - he knows nothing about deaf people and their needs. His office staff wondered why I couldn't just "sign" for him. (They even said 'well, if you REFUSE to do that, I guess we'll get one.') The interpreter and I just looked at each other. Usually people are very accommodating and ask where would the best placement be. But not this guy. He states "I prefer all my vision to be in THIS direction, mostly." He wanted the interpreter to sit next to Super Hero. Excuse me, hearing person who knows nothing about deaf people. If a deaf person sits next to the interpreter, then he can't see you and her at the same time. We finally got it figured out (I figured out that this guy liked to be in control and have his needs met. It mattered not one whit if we were comfortable. Super Hero and I were not sitting next to each other. Calculated move on his part.)
He starts going over paperwork from the hospital and says right away that he doesn't understand the diagnoses. I was told it wasn't bipolar. But I was also told that insurance companies don't like the diagnoses "severe mood dysregulation". So I was sure that this doctor felt it was better to put bipolar so our insurance would cover it. This new doctor says "That Crombie just likes to make up his own diagnoses to fit whatever he wants." I just sat there stunned. Who talks about a colleague like that? More talk about what Holland did in the hospital. He threw a chair. I knew that he had trouble a couple nights. Separation anxiety from me. Not wanting me to leave. Threw a chair? I doubt it. Knocked it over? More likely. He goes through the list of grievances and the whole time, he's very condescending about it. Like I didn't already know that Holland had problems and how bad his behavior could be. This guy needed to tell me again how awful he was. The killer part came, though, when he said something about the meeting last week with Super Hero. He said "it's too bad you chose not to take care of that." (meaning me getting an interpreter). Again, stunned, I sat there. Then I had to ability to say, "There wasn't anything to "take care of." I wasn't planning on having my husband come. He had missed so much work with the first appointment and all the times coming to visit Holland in the hospital that I didn't find it necessary to have him be there a third time. Knowing that we already had this appointment scheduled. Your office told me I would be charged $130 for canceling and I felt that $25 was better than $130 for nothing." Then he says, "Well, it was about 15 minutes of productivity." I said "good, at least you got something done." I really can't believe I was able to utter any words. I have never been so insulted and belittled in my life by a professional like that. There were many other things he said. Off-hand remarks about things, like "even though you are a saint, even YOU can't do everything." Believe me. It wasn't a compliment the way he said it.
At one point after reading through parts of the report, he tells me that Holland's reaction to being there was NOT normal. He told me that 90% of kids who come in do not have the severity of adjustment issues that Holland did. I said, "you mean that kids aren't scared and don't react that way?" No, he said. The only explanation for that is that this guy is talking about drugged up, comatose kids. Because there's no way on earth, if you dropped a kid off at a hospital, and said, you're staying and I'm not. Here are some security guards that you don't know, look really scary and you have to go with them. You're telling me that it's not normal to freak out about that?
He also requested more testing. I'm sick of testing. Holland's sick of testing. I said I didn't think the psychologists at his office were covered. "That's going to be a problem." he says. I said, "I'm sure my insurance has psychologists in-network." "yes, but then I wouldn't just be able to talk to them. I would have to wait for their report." Oh. So sorry that you're inconvenienced by all this. What can I do to make it easier for you? (that's what was going on in my head. Really wishing I had said something like this.) I knew within the first five minutes that hell would have to freeze over before I went back to this guy. I offered very little information (didn't bother telling him about the meth use. Why give him the satisfaction? The egotistical jerk didn't need any more pats on the back). I just nodded and took the prescriptions (he gave me a year's worth of refills. He has some major confidence in himself). Then when I got out into the parking lot, the interpreter and I just looked at each other, stunned. Then we both signed "jerk, with a capital J".
So that's why I need to write a review on this guy. People out there need to know that this person is a horrible doctor. Has horrible 'bedside' manners. Doesn't care about people and has been in the business so long, he's right and doesn't need to listen to the parents or care about their feelings.
There is a light shining dimly at the end of this hellish tunnel. On Monday, Holland and I have an appointment with a Nurse Practitioner that the social worker at Emanuel recommended. She said she's even better than most doctors (after seeing this guy, I don't doubt that.) She can prescribe medications and also will do counseling. And she's close by. No more four hour productions of dropping off kids, fighting traffic to and back. And you can look for my review of Dr. Turner from The Children's Program in Portland, Oregon, coming soon to a yelp app near you.
After the first appointment, I immediately made a second appointment so our interpreter would know her schedule. It was more than two weeks away. Then the major melt down happened and I didn't know what to do, so I called this guy's office hoping to either get some really good advice or an appointment sooner than our already scheduled one. The soonest they had was for a week later. She told me to "take care of the interpreter" for her. I didn't bother telling her that I wasn't going to get an interpreter. Super Hero had been taking so much time off from work to see Holland at the hospital, the first doctor's appointment, etc. I didn't feel he needed to go in with me (seeing as the then third appointment would also be with an interpreter and I didn't want to cancel that one). On Wednesday night when I left the hospital I spoke with the doctor and they wanted to keep him until Friday to be able to monitor his sleeping and the reduced med in the morning. So I was expecting to have him come home on Friday. Thursday morning (the day of the appointment I was to have with the psychiatrist), the hospital calls and says, "come get him." They had 5 new kids come in the night before between the ages of 9 and 11. They just didn't have the staff for that large a group of younger kids and Holland would be doing nothing productive for that time.
Big quandry here. I was supposed to drop my kids off at my mom's and drive up to Portland for this appointment. There was no way I could keep the appointment and pick up Holland from the hospital. I called the doctor's office and pleaded my case. I just couldn't make the appointment. Under the circumstances, would they not charge me for a late cancellation. No. Doctor's policy said I would be charged $130 for a canceled appointment. I couldn't believe it. They have no feelings. No empathy. I would understand it if I canceled and it wasn't an emergency. But I wasn't running off to the beach. So I emailed Super Hero and asked him if he could go to the meeting for me. No interpreter. Last minute change. We both thought a $25 copay sounded better than $130 for no services received. He came home with a bunch of paper work and items the doctor requested. Interestingly enough, he requested the discharge papers. Which he would have had, HAD HE WAITED FOR ME TO BE THERE. This guy is unbelievable.
So, now we're up to Thursday, yesterday. Scheduled appointment with the interpreter there. We arrived early. We waited 10 minutes past our appointment. No explanation. No - "doctor will be with you shortly." Nothing. Then when we get into his office, he starts directing everyone where to sit. Now first off - he knows nothing about deaf people and their needs. His office staff wondered why I couldn't just "sign" for him. (They even said 'well, if you REFUSE to do that, I guess we'll get one.') The interpreter and I just looked at each other. Usually people are very accommodating and ask where would the best placement be. But not this guy. He states "I prefer all my vision to be in THIS direction, mostly." He wanted the interpreter to sit next to Super Hero. Excuse me, hearing person who knows nothing about deaf people. If a deaf person sits next to the interpreter, then he can't see you and her at the same time. We finally got it figured out (I figured out that this guy liked to be in control and have his needs met. It mattered not one whit if we were comfortable. Super Hero and I were not sitting next to each other. Calculated move on his part.)
He starts going over paperwork from the hospital and says right away that he doesn't understand the diagnoses. I was told it wasn't bipolar. But I was also told that insurance companies don't like the diagnoses "severe mood dysregulation". So I was sure that this doctor felt it was better to put bipolar so our insurance would cover it. This new doctor says "That Crombie just likes to make up his own diagnoses to fit whatever he wants." I just sat there stunned. Who talks about a colleague like that? More talk about what Holland did in the hospital. He threw a chair. I knew that he had trouble a couple nights. Separation anxiety from me. Not wanting me to leave. Threw a chair? I doubt it. Knocked it over? More likely. He goes through the list of grievances and the whole time, he's very condescending about it. Like I didn't already know that Holland had problems and how bad his behavior could be. This guy needed to tell me again how awful he was. The killer part came, though, when he said something about the meeting last week with Super Hero. He said "it's too bad you chose not to take care of that." (meaning me getting an interpreter). Again, stunned, I sat there. Then I had to ability to say, "There wasn't anything to "take care of." I wasn't planning on having my husband come. He had missed so much work with the first appointment and all the times coming to visit Holland in the hospital that I didn't find it necessary to have him be there a third time. Knowing that we already had this appointment scheduled. Your office told me I would be charged $130 for canceling and I felt that $25 was better than $130 for nothing." Then he says, "Well, it was about 15 minutes of productivity." I said "good, at least you got something done." I really can't believe I was able to utter any words. I have never been so insulted and belittled in my life by a professional like that. There were many other things he said. Off-hand remarks about things, like "even though you are a saint, even YOU can't do everything." Believe me. It wasn't a compliment the way he said it.
At one point after reading through parts of the report, he tells me that Holland's reaction to being there was NOT normal. He told me that 90% of kids who come in do not have the severity of adjustment issues that Holland did. I said, "you mean that kids aren't scared and don't react that way?" No, he said. The only explanation for that is that this guy is talking about drugged up, comatose kids. Because there's no way on earth, if you dropped a kid off at a hospital, and said, you're staying and I'm not. Here are some security guards that you don't know, look really scary and you have to go with them. You're telling me that it's not normal to freak out about that?
He also requested more testing. I'm sick of testing. Holland's sick of testing. I said I didn't think the psychologists at his office were covered. "That's going to be a problem." he says. I said, "I'm sure my insurance has psychologists in-network." "yes, but then I wouldn't just be able to talk to them. I would have to wait for their report." Oh. So sorry that you're inconvenienced by all this. What can I do to make it easier for you? (that's what was going on in my head. Really wishing I had said something like this.) I knew within the first five minutes that hell would have to freeze over before I went back to this guy. I offered very little information (didn't bother telling him about the meth use. Why give him the satisfaction? The egotistical jerk didn't need any more pats on the back). I just nodded and took the prescriptions (he gave me a year's worth of refills. He has some major confidence in himself). Then when I got out into the parking lot, the interpreter and I just looked at each other, stunned. Then we both signed "jerk, with a capital J".
So that's why I need to write a review on this guy. People out there need to know that this person is a horrible doctor. Has horrible 'bedside' manners. Doesn't care about people and has been in the business so long, he's right and doesn't need to listen to the parents or care about their feelings.
There is a light shining dimly at the end of this hellish tunnel. On Monday, Holland and I have an appointment with a Nurse Practitioner that the social worker at Emanuel recommended. She said she's even better than most doctors (after seeing this guy, I don't doubt that.) She can prescribe medications and also will do counseling. And she's close by. No more four hour productions of dropping off kids, fighting traffic to and back. And you can look for my review of Dr. Turner from The Children's Program in Portland, Oregon, coming soon to a yelp app near you.
Wednesday, July 14, 2010
Wednesday with Holland
Today I got a late start and didn't get to the hospital until close to 4. Traffic was horrible. Car on fire on I205. Major construction on MLK. Four lanes squished to one for a few blocks. Took me close to an hour to get there. As soon as I walked in, he announces that the doctor said he could leave. I didn't really think this was accurate because he tends to hear things the way he wants them to go. When the doctor did come in to chat, he said that they talked about Holland leaving on Friday, so I understood why he got excited. All he heard was "go home". So he was a bit upset. He's also not eating. They've started to monitor his caloric intake because they don't want him to lose weight. I know it's just because he doesn't like new things. The hospital did a fantastic job with all the gluten free food, but with Holland's issues, I'm really not surprised he's not eating it. They did start offering him Boost drinks and I had given him those before when he went through a spot of not wanting anything at home. I've also brought tons of food he likes: gluten free bread I made; blueberries from our garden; snap peas from Aunt Heather; strawberries; cantaloupe; cherries. He loved it all and that ended up being his dinner.
The bad thing about not being able to leave tomorrow is the social worker can't meet until Friday. So he has to wait two extra days until I can have an exit meeting with her. Totally not good. My dad's birthday is tomorrow and when he found out he might be missing a party, he got really upset. They talked about doing an hour pass, but getting him back into the unit would probably get ugly. I see no reason to make him go back. Once we leave, that's it.
So far the doctor has eliminated or reduced with the intention of eliminating, 3 meds. So happy about that. Simplify. And since we are treating Severe Mood Dysregulation instead of Bipolar, I think the treatment is going to be way better. Tomorrow I'm meeting with the psychiatrist that Super Hero and I met with a few weeks ago. I don't plan on continuing that relationship, but the social worker thought it was very important to meet with him since I already had the appointment. I still have not had a chance to call the nurse practitioner that was recommended. But what can I say? The hospital staff lock up my purse and phone and I'm without technology (and bored!!) for 6 or more hours.
The bad thing about not being able to leave tomorrow is the social worker can't meet until Friday. So he has to wait two extra days until I can have an exit meeting with her. Totally not good. My dad's birthday is tomorrow and when he found out he might be missing a party, he got really upset. They talked about doing an hour pass, but getting him back into the unit would probably get ugly. I see no reason to make him go back. Once we leave, that's it.
So far the doctor has eliminated or reduced with the intention of eliminating, 3 meds. So happy about that. Simplify. And since we are treating Severe Mood Dysregulation instead of Bipolar, I think the treatment is going to be way better. Tomorrow I'm meeting with the psychiatrist that Super Hero and I met with a few weeks ago. I don't plan on continuing that relationship, but the social worker thought it was very important to meet with him since I already had the appointment. I still have not had a chance to call the nurse practitioner that was recommended. But what can I say? The hospital staff lock up my purse and phone and I'm without technology (and bored!!) for 6 or more hours.
Updates Galore
I guess I thought I posted about our doctor troubles, but I looked back and saw that I never did. I deja-vued Twitter. Or Facebook. Or the mom board I'm on. I'm getting old if I can't remember where I write something. Or I have too many places that I can write.
A few months ago I got a letter from the psychiatrist Holland has been seeing for over 4 years that he was closing his practice. He was taking a new position in another state and wished us well. He gave a few names of doctors he might recommend (no doctor ever should have to commit to any advice, you know). But all of those doctors were either not on my insurance list, were full and not taking new patients or didn't think they could help us because we were too complicated. I so misunderstood what a psychiatrist does. Someone might want to add a definition to Wikipedia so we lay-people can understand their job. After calling about 8 different doctors, I finally found one that was on my insurance but couldn't see us for a whole month! Ridiculous. The mental health care in the U.S. is appalling if I can't get an appointment for a month. And he also didn't want to see Holland first. He wanted to see Super Hero and I. So then I had to call around for an interpreter ("why can't you interpret? You sign, don't you? Well, okay. If you're refusing to do it, we'll find someone".) I just ignore people who put it this way. They are clueless and me trying to educate them will just frustrate me more. After 45 minutes of talking, explaining, answering questions, he tells me it's not bipolar, but looks like results of meth use in-utero. He said lots of babies born in Portland have moms that used meth. I explained our son was born in San Diego. Whew! We're in the clear. Turns out, he was exactly right. I contacted the gramma and found out that in fact she (birth mom) had used meth and probably other drugs (but she would never admit to them).
So skip forward about 2 weeks and I've hit my limit. I tried to take him to his new summer school program. Sparing the ugly, ugly details, I had to call the police and then my sister and I ended up driving him to the emergency room to have him admitted for observation. My intent was to get him in inpatient care and the only way to do that is through the emergency room. It was a horrid 5 hours of sitting, waiting, filling out paper work and Holland begging to go home so he could swim in his aunt's new pool. When we finally found out he'd be able to be admitted, it was 10 p.m. He was exhausted. I was exhausted. And then I noticed 2 big security guys come into his room. They actually had to use big security guys to strongarm him over to the pediatric psych unit. That was the most horrible day. But I had run out of options. There are really no options left when you have to call the police and take your son to the ER in hopes they see a need for inpatient care.
He's been there over a week. And apart from yesterday's little encounter with an on-call nurse, the staff have been wonderful. His inpatient psych is smart, to the point, doesn't mince words and lets me ask any questions I want to. The nursing staff is friendly, patient, and respectful of Holland as a human being. The only problem we're having is food. He won't eat anything they've given him. The dietician and I worked on a gluten-free menu that was great. Lots of options. Food did not look like hospital food. I've wanted to eat most of the meals. They've resorted to giving him protein drinks and said I could bring in anything I wanted. So today I'm bringing in his GF oatmeal, lots of fresh fruit and veggies and I also made GF bread that he's been munching on.
I don't know exactly when he will come home. They've adjusted his meds and want to make sure he's on good doses before they send him home. They've given me lots of doctor resources and counselor's names that hopefully I will find someone wonderful and close by. The first few days were the worst. I couldn't even say goodbye because he got upset, anxious, mad that I was leaving. But he's been better the last few days. Knowing that I'll come back. Now he just needs to make the connection that when he's finished doing what they need him to do (group meetings, individual counseling) he can come home. His lack of executive-functioning is not making that connection. Pray that he will just make a compromise and talk so he can get out of there quicker.
A few months ago I got a letter from the psychiatrist Holland has been seeing for over 4 years that he was closing his practice. He was taking a new position in another state and wished us well. He gave a few names of doctors he might recommend (no doctor ever should have to commit to any advice, you know). But all of those doctors were either not on my insurance list, were full and not taking new patients or didn't think they could help us because we were too complicated. I so misunderstood what a psychiatrist does. Someone might want to add a definition to Wikipedia so we lay-people can understand their job. After calling about 8 different doctors, I finally found one that was on my insurance but couldn't see us for a whole month! Ridiculous. The mental health care in the U.S. is appalling if I can't get an appointment for a month. And he also didn't want to see Holland first. He wanted to see Super Hero and I. So then I had to call around for an interpreter ("why can't you interpret? You sign, don't you? Well, okay. If you're refusing to do it, we'll find someone".) I just ignore people who put it this way. They are clueless and me trying to educate them will just frustrate me more. After 45 minutes of talking, explaining, answering questions, he tells me it's not bipolar, but looks like results of meth use in-utero. He said lots of babies born in Portland have moms that used meth. I explained our son was born in San Diego. Whew! We're in the clear. Turns out, he was exactly right. I contacted the gramma and found out that in fact she (birth mom) had used meth and probably other drugs (but she would never admit to them).
So skip forward about 2 weeks and I've hit my limit. I tried to take him to his new summer school program. Sparing the ugly, ugly details, I had to call the police and then my sister and I ended up driving him to the emergency room to have him admitted for observation. My intent was to get him in inpatient care and the only way to do that is through the emergency room. It was a horrid 5 hours of sitting, waiting, filling out paper work and Holland begging to go home so he could swim in his aunt's new pool. When we finally found out he'd be able to be admitted, it was 10 p.m. He was exhausted. I was exhausted. And then I noticed 2 big security guys come into his room. They actually had to use big security guys to strongarm him over to the pediatric psych unit. That was the most horrible day. But I had run out of options. There are really no options left when you have to call the police and take your son to the ER in hopes they see a need for inpatient care.
He's been there over a week. And apart from yesterday's little encounter with an on-call nurse, the staff have been wonderful. His inpatient psych is smart, to the point, doesn't mince words and lets me ask any questions I want to. The nursing staff is friendly, patient, and respectful of Holland as a human being. The only problem we're having is food. He won't eat anything they've given him. The dietician and I worked on a gluten-free menu that was great. Lots of options. Food did not look like hospital food. I've wanted to eat most of the meals. They've resorted to giving him protein drinks and said I could bring in anything I wanted. So today I'm bringing in his GF oatmeal, lots of fresh fruit and veggies and I also made GF bread that he's been munching on.
I don't know exactly when he will come home. They've adjusted his meds and want to make sure he's on good doses before they send him home. They've given me lots of doctor resources and counselor's names that hopefully I will find someone wonderful and close by. The first few days were the worst. I couldn't even say goodbye because he got upset, anxious, mad that I was leaving. But he's been better the last few days. Knowing that I'll come back. Now he just needs to make the connection that when he's finished doing what they need him to do (group meetings, individual counseling) he can come home. His lack of executive-functioning is not making that connection. Pray that he will just make a compromise and talk so he can get out of there quicker.
Friday, July 2, 2010
Hard News
Want to know what it feels like to get punched in the stomach? Have a doctor tell you your child shows the symptoms of a meth baby and he doesn't think that he is bipolar, which you've been treating with toxic drugs for 5 years. Then get word that in fact, birth mom was taking meth and probably other drugs as well. Any treatment now is useless. He will not get better. Drugs will not help his underdeveloped brain. I don't see how I'm going to be able to do any type of discipline knowing his brain is damaged from drugs.
Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.
Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.
Thursday, July 1, 2010
The Dog
Well, instead of paying for medical necessities, I'll probably be paying for my neighbor's dog to get its leg fixed. Today after lunch I gave Holland permission to go outside and play in the front yard with the neighbor boy. A while later, I got a call from my neighbor across the street. She wanted to know if Holland knew how her dog got hurt. I didn't even know he was in her yard. Apparently kids migrated over to her yard and there were probably 6 or 8 kids in her yard. They were running around, playing with the dog. When she went back there, the dog was limping. She asked him about it and he said he was petting the dog, but he didn't know how the dog got hurt. I got two more phone calls asking if he remembered anything else and I kept saying no. We already knew his memory is terrible. Then I get a call from the husband saying that one of the neighbor girls said Holland was chasing the dog and jumping on it. She is the only one saying this, but what does that matter? They assume that Holland is the one who did it, so I'm sure I'll be paying for this. At least if it was a person that got hurt, I'd only have to pay for what insurance didn't cover.
So not only is he destroying my property but now this involves the neighbors as well.
So not only is he destroying my property but now this involves the neighbors as well.
Sunday, June 27, 2010
Shriners: Part II
I blogged awhile ago about Egypt getting into Shriners for her arthritis. There was this whole application process and when we were approved, we went up to meet with the doctor to determine if she could be helped by their services. It was determined that yes, she would. I thought I would continue with them, but after trying to get ahold of the case manager to make another appointment, I felt weird because they saw that I went back to our original doctor. We had already made a follow-up appointment before the Shriners appointment, so I just kept it. The case manager says, "Well, are you using his services or ours? There should be only one doctor handling this." So I felt weird. I should be able to go to any doctor I want, so I stopped going there.
After finding out Holland's orthotics were going to cost us $500, I decided to give Shriners another chance. I applied for care for his spina bifida and hopefully they will determine that all his leg problems, etc are caused by that. Otherwise we can't get help from them. We got an approval letter in the mail and have an appointment in August. Now I have to call all the doctor's we've seen over the years and have them send copies of all the x-rays, CAT scans, surgeries he's had.
After finding out Holland's orthotics were going to cost us $500, I decided to give Shriners another chance. I applied for care for his spina bifida and hopefully they will determine that all his leg problems, etc are caused by that. Otherwise we can't get help from them. We got an approval letter in the mail and have an appointment in August. Now I have to call all the doctor's we've seen over the years and have them send copies of all the x-rays, CAT scans, surgeries he's had.
Wednesday, June 23, 2010
Whiplash
I'm inventing a new medical term and calling it "Emotional Whiplash". Holland will swear up and down that he will do such-and-such and then when we get there, he refuses, cries and panics. This has happened several times the past few weeks and it's driving me crazy. This week I've been taking Romania and Egypt to a VBS at a church near our house. Holland went last year, but I ended up sitting in the classroom the entire time because he didn't want me to leave. This is his last year participating and I thought for sure he'd want to do it.
Monday: he promises he'll go, looks excited, we get there and he gets this panicked look on his face "I don't want to stay, I'm homesick". Fine. We leave.
Tuesday: he promises he'll go, looks excited, we get there and he gets this panicked look on his face. Are you sure? Yes, I don't feel good (always his way out of something he doesn't like or can't accomplish)
Wednesday morning at 7.10 am. He comes into my room and says he wants to invite the neighbor boy. I said it's too late to invite him. No, no, He assures me. I asked him yesterday and he wants to go. I said - "but you won't want to stay. We'll get there and then you'll change your mind." "No, I promise. If Stephen goes, I'll want to stay." Me to myself 'yeah, right'. He and Romania wait outside on the porch swing for 30 minutes waiting for the neighbor boy to walk over and we could leave. He seems excited. He even grabbed two bananas and a gluten free bar so he'd have a snack. We get to the church. "I don't want to go in." I said you have to. You invited a friend. I walk away and take Egypt to her group. I go sit in my car and wait. And five minutes later, Romania comes out with a teacher and says "Holland doesn't want to stay." There's the whiplash. It's all day long. It makes for an exhausting day because I never know what I'll be able to do.
Monday: he promises he'll go, looks excited, we get there and he gets this panicked look on his face "I don't want to stay, I'm homesick". Fine. We leave.
Tuesday: he promises he'll go, looks excited, we get there and he gets this panicked look on his face. Are you sure? Yes, I don't feel good (always his way out of something he doesn't like or can't accomplish)
Wednesday morning at 7.10 am. He comes into my room and says he wants to invite the neighbor boy. I said it's too late to invite him. No, no, He assures me. I asked him yesterday and he wants to go. I said - "but you won't want to stay. We'll get there and then you'll change your mind." "No, I promise. If Stephen goes, I'll want to stay." Me to myself 'yeah, right'. He and Romania wait outside on the porch swing for 30 minutes waiting for the neighbor boy to walk over and we could leave. He seems excited. He even grabbed two bananas and a gluten free bar so he'd have a snack. We get to the church. "I don't want to go in." I said you have to. You invited a friend. I walk away and take Egypt to her group. I go sit in my car and wait. And five minutes later, Romania comes out with a teacher and says "Holland doesn't want to stay." There's the whiplash. It's all day long. It makes for an exhausting day because I never know what I'll be able to do.
Thursday, May 20, 2010
Basic Skills
This morning I visited the school where I want Holland to attend next fall. He's been staying at my mom's house for a few days and I took Egypt with me to observe the class. I really liked it. They use a lot of the same curriculum I use; they're a Christian school that's is located very close to me and the instruction seems great. The morning teacher uses the Orton-Gillingham method that I've been looking to get my hands on for Holland. This was the last day of school, so it wasn't really a normal day. But the kids are all very respectful, they stayed on task, the teacher had no distractions from the kids while teaching. The afternoons would be spent doing science projects, art projects, etc. It's four days a week from 9-3.
Oh - and it costs $500 a month. I don't have $500 a month. Pray for a miracle!
Oh - and it costs $500 a month. I don't have $500 a month. Pray for a miracle!
Saturday, May 1, 2010
So. Holland endured 8 hours of testing. We found out his orthotics could cost $500. He has constant abdominal pain from impacted bowel. His legs hurt everyday from not having orthotics. His hips hurt. And I just got a letter from the psychiatrist we've been working with for four years. He's closing his practice and moving to Vancouver to be the head of some program up there. I have a month to find someone to take his place that we like, that's on our insurance and is reasonably close by.
Whats on the agenda next? I think I'm done with all the depressing, frustrating, unfair events. What good could possibly come out of this?
Whats on the agenda next? I think I'm done with all the depressing, frustrating, unfair events. What good could possibly come out of this?
Monday, April 26, 2010
Orthotics and the Testing
Holland had two more hours of testing this morning and it went well. He got to work with the same guy as last Friday - lots of hands on, memory games, sequencing stuff. I used this time to make a bunch of phone calls to get Holland an appointment for new inserts for his shoes. He has very flat feet (almost no arch) and his ligaments are very weak. Not only is he pidgeon-toed, but with weak ankles, he rotates his foot inward. It's very painful and his legs hurt him every day.
I found out that our new insurance coverage for orthotics is just lousy. Our deductible is $500. The insurance we had last year covered almost all of the orthotic and they only cost about $90. If I was smart (and could predict the future) I would have bought another pair last year so I wouldn't have to pay $425 for these. I chose to go back to the place that did his first pair. (She's also the one that did Egypt's shoe lift for her arthritis - gee, I'm giving her a lot of business!). So I like her and don't feel like using up energy to get the pre-authorization to go somewhere else. My insurance requires a doctor's authorization and the clinic where I was planning to go requires the doctor to set up the appointment. It could take months to get in with these people. It wouldn't matter even if I went to the preferred provider because my deductible is so high. So, now I gotta come up with $425. This means that I won't be able to have any testing for dyslexia done.
I called several places last week to find out about testing. The first place said they do two tests and it will run $800 for both. That includes a report (how generous!) and recommendations for tutoring. So after all that testing is done, I will still have to pay for private tutoring. I heard back from another place today and she at least said they would want all of his testing scores. Then they could get a clearer picture of patterns in learning and then I wouldn't have to pay for duplicate testing. It's so frustrating that the school will not test for dyslexia. They don't consider it a learning disability. And insurance doesn't cover anything like this. How do people afford this? It's obvious I should have been a speech pathologist, a psychologist and learned the Orton-Gillingham method so I wouldn't have to pay anyone to do that.
I found out that our new insurance coverage for orthotics is just lousy. Our deductible is $500. The insurance we had last year covered almost all of the orthotic and they only cost about $90. If I was smart (and could predict the future) I would have bought another pair last year so I wouldn't have to pay $425 for these. I chose to go back to the place that did his first pair. (She's also the one that did Egypt's shoe lift for her arthritis - gee, I'm giving her a lot of business!). So I like her and don't feel like using up energy to get the pre-authorization to go somewhere else. My insurance requires a doctor's authorization and the clinic where I was planning to go requires the doctor to set up the appointment. It could take months to get in with these people. It wouldn't matter even if I went to the preferred provider because my deductible is so high. So, now I gotta come up with $425. This means that I won't be able to have any testing for dyslexia done.
I called several places last week to find out about testing. The first place said they do two tests and it will run $800 for both. That includes a report (how generous!) and recommendations for tutoring. So after all that testing is done, I will still have to pay for private tutoring. I heard back from another place today and she at least said they would want all of his testing scores. Then they could get a clearer picture of patterns in learning and then I wouldn't have to pay for duplicate testing. It's so frustrating that the school will not test for dyslexia. They don't consider it a learning disability. And insurance doesn't cover anything like this. How do people afford this? It's obvious I should have been a speech pathologist, a psychologist and learned the Orton-Gillingham method so I wouldn't have to pay anyone to do that.
Saturday, April 24, 2010
Four Hours Down, Four To Go
This past week Holland had 2 sessions of testing with two different people. During our initial meeting, the testers asked if there were any motivations that he would need. I said, oh yes. He's motivated by money - it's his 'love language'! I told them about the weekly "yes, mom" contest we'd been doing and said I'd bring in the poker chips and they could give him whatever they felt he earned for the work.
The first test was on Monday and after arriving and sitting down for about 2 minutes, I could tell it wasn't going to go smoothly. He already complained of being too tired and not wanting to be there. I had Egypt with me and just assumed I'd be able to drop him off and run errands with her. Well, he wouldn't even leave the office to walk over to the testing area. He was freaked that I was going to leave him and started to cry. The tester looked at me and mouthed "it's not worth it to continue if he does this." I told her it wouldn't matter if we came back - he'd still feel the same way later. I finally was able to convince him to at least go look at the room where he'd be so he could be familiar with it and ready for when we DID come back to test. He wasn't cooperative, but managed to show some interest in all the cool toys she had in her office. After about 10 minutes, he finally warmed up to the idea and Egypt and I sat at a table for two hours, right outside her office. Big window and all so he could see that I never left. I was totally unprepared to entertain Egypt for two hours. Luckily, she had these cool magnetic shapes that she played with and I let her play a few games on my iPhone.
He finished the testing and earned 5 poker chips. On Friday we went back for two more hours of cognitive testing (Monday was for reading and writing). I had to drop Egypt and Romania at my mom's house because Romania didn't have school that day. Holland was less thrilled about me leaving the testing area, but due to confidentiality reasons, I couldn't sit in the outer office because there were other kids being tested. Holland reluctantly agreed and I sat in the main hallway for almost 2 hours. This testing was more fun for him - matching, sorting, manipulatives, games. It didn't really feel like testing to him, so he had a good time. He earned 6 poker chips today and the tester even showed him how to play poker during their break.
This week he has one more session with each tester. Then we will schedule a meeting to discuss the results. I did talk to the language tester and voiced my concerns over the possible change in disability status. She said that if the paperwork would have crossed their desk without prior approval, they would have red-flagged it. She said they take those labelings very seriously. And the woman that wanted to change his status didn't even have the authority to change it on her own (how was I to know that?). But that's good. At least I know that more than one person involved has to know what's going on before a huge decision like that is made. She did tell me, based on her first session, that he didn't strike her as MR. He has obvious reading and writing deficits and the bipolar adds a huge variable to that ability to learn something. It was hard for her to know if he would have performed better if she had pushed him more. But he gets frustrated so easily when he's forced to do something he's not good at. (aren't we all??!)
I also called a Parent Advocate place this week to find someone to go with me to the IEP meetings. I'm not sure how helpful they're going to be. They aren't allowed to interject their opinion. They are there to take notes and help you voice your opinions and ask for services. I asked the helpline if they would be able to steer me in the right direction for services and she said no. Added to the befuddled mess is the fact that I homeschool and not all of their advocates know much about laws pertaining to homeschooling and IEP's. Great.
The first test was on Monday and after arriving and sitting down for about 2 minutes, I could tell it wasn't going to go smoothly. He already complained of being too tired and not wanting to be there. I had Egypt with me and just assumed I'd be able to drop him off and run errands with her. Well, he wouldn't even leave the office to walk over to the testing area. He was freaked that I was going to leave him and started to cry. The tester looked at me and mouthed "it's not worth it to continue if he does this." I told her it wouldn't matter if we came back - he'd still feel the same way later. I finally was able to convince him to at least go look at the room where he'd be so he could be familiar with it and ready for when we DID come back to test. He wasn't cooperative, but managed to show some interest in all the cool toys she had in her office. After about 10 minutes, he finally warmed up to the idea and Egypt and I sat at a table for two hours, right outside her office. Big window and all so he could see that I never left. I was totally unprepared to entertain Egypt for two hours. Luckily, she had these cool magnetic shapes that she played with and I let her play a few games on my iPhone.
He finished the testing and earned 5 poker chips. On Friday we went back for two more hours of cognitive testing (Monday was for reading and writing). I had to drop Egypt and Romania at my mom's house because Romania didn't have school that day. Holland was less thrilled about me leaving the testing area, but due to confidentiality reasons, I couldn't sit in the outer office because there were other kids being tested. Holland reluctantly agreed and I sat in the main hallway for almost 2 hours. This testing was more fun for him - matching, sorting, manipulatives, games. It didn't really feel like testing to him, so he had a good time. He earned 6 poker chips today and the tester even showed him how to play poker during their break.
This week he has one more session with each tester. Then we will schedule a meeting to discuss the results. I did talk to the language tester and voiced my concerns over the possible change in disability status. She said that if the paperwork would have crossed their desk without prior approval, they would have red-flagged it. She said they take those labelings very seriously. And the woman that wanted to change his status didn't even have the authority to change it on her own (how was I to know that?). But that's good. At least I know that more than one person involved has to know what's going on before a huge decision like that is made. She did tell me, based on her first session, that he didn't strike her as MR. He has obvious reading and writing deficits and the bipolar adds a huge variable to that ability to learn something. It was hard for her to know if he would have performed better if she had pushed him more. But he gets frustrated so easily when he's forced to do something he's not good at. (aren't we all??!)
I also called a Parent Advocate place this week to find someone to go with me to the IEP meetings. I'm not sure how helpful they're going to be. They aren't allowed to interject their opinion. They are there to take notes and help you voice your opinions and ask for services. I asked the helpline if they would be able to steer me in the right direction for services and she said no. Added to the befuddled mess is the fact that I homeschool and not all of their advocates know much about laws pertaining to homeschooling and IEP's. Great.
Tuesday, April 13, 2010
New Tests Scheduled
I had a really good meeting yesterday with the special ed people from the district. These are the same people that tested Holland 3 years ago when he was first put on his IEP. They are competent, thorough and mindful of his limitations regarding duration of testing. We have scheduled 4 sessions, each 2 hours. I've got it all figured out how I'm going to motivate him to make it through the hours of testing: poker chips.
My sister started this "yes, mom" contest at her house about a month ago. Every time a kid utters the words "yes, mom" and does what was asked, they get a token put in a jar. I've set up jam jars in my kitchen window and bought poker chips for tokens. Each kid has a different color, so there's no swappin' going on. The first week Romania won. Then Egypt won. The third week, Holland had it in the bag. But after a disastrous day and behavior that would have scared the socks off anyone watching, I removed half of his tokens. I didn't want to to it. I wanted the tokens to reflect the positive behavior and what good things he was doing. But I just couldn't let this go by. As it turned out, Romania and Egypt tied, so I took them out for a quick treat of ice cream at McDonald's. From his reaction, you would have thought that I'd
killed a pet or something. Ice cream made him physically distraught. I thought he was going to throw up and I prayed that he didn't destroy anything while I was gone.
So next week, I'm giving poker chips to the testers so they can reward Holland during the testing. Hopefully he'll rack up a huge number of chips and run away with the win. At some point this all has to get better. The tension in this house makes me want to crawl back in bed everyday. If I didn't have to take Romania to the bus, I probably wouldn't get out of bed every day.
My sister started this "yes, mom" contest at her house about a month ago. Every time a kid utters the words "yes, mom" and does what was asked, they get a token put in a jar. I've set up jam jars in my kitchen window and bought poker chips for tokens. Each kid has a different color, so there's no swappin' going on. The first week Romania won. Then Egypt won. The third week, Holland had it in the bag. But after a disastrous day and behavior that would have scared the socks off anyone watching, I removed half of his tokens. I didn't want to to it. I wanted the tokens to reflect the positive behavior and what good things he was doing. But I just couldn't let this go by. As it turned out, Romania and Egypt tied, so I took them out for a quick treat of ice cream at McDonald's. From his reaction, you would have thought that I'd
killed a pet or something. Ice cream made him physically distraught. I thought he was going to throw up and I prayed that he didn't destroy anything while I was gone.
So next week, I'm giving poker chips to the testers so they can reward Holland during the testing. Hopefully he'll rack up a huge number of chips and run away with the win. At some point this all has to get better. The tension in this house makes me want to crawl back in bed everyday. If I didn't have to take Romania to the bus, I probably wouldn't get out of bed every day.
Friday, April 2, 2010
Why Tests Are Bogus
A lot has happened in the past month. Holland finished all his OAKS testing, did all the testing for his IEP re-eval and we got all the results. This is probably why I haven't posted in almost a month. Hard to believe it's been that long since I've had something to say. I actually have lots to say, but just having a hard time saying it.
Someday when the kids are grown and I have no purpose, my purpose is going to be a parent advocate for parents at IEP meetings. I have 3 years of experience with IEP's on the other end: I wrote them for all my deaf students. I sat in on parent meetings and told of the student's progress. I answered questions about goals and test scores. But that didn't prepare me for what happened at my IEP meeting. After cramming what should have been 8 or 9 hour's worth of testing into 6, I went into this meeting hopeful about help I was going to get to help Holland learn to read. I was going to assert myself and straight out ask for what I needed. I'm kind of an oddity to them, I'm sure. I homeschool my kid and he's on an IEP. No one knows who legally is required to help me. The charter school he's enrolled in doesn't have the resources (no on-site resource teacher) and the district says he's not enrolled in one of their schools to help him. Makes you want to scream.
But the fact that I didn't have someone on "my side" sitting with me while the tester told me that my child is no longer considered "learning disabled" and they want to label him "mentally retarded" was something that I couldn't even comprehend. Who would ever think that this incredibly curious, hard-working, industrious kid would ever test as mentally disabled? She started out by telling me that "she believed the test scores to be accurate and valid". It didn't matter that Holland had never met her, she was 30 minutes late to our first meeting, he refused at first to even cooperate and wouldn't work if I wasn't sitting in the room. The second session was spent playing tag. We went to the tester's school and she came to ours. Fourty-five minutes of waiting for her to show up and then she did more testing. The last day we tested, I had all three kids with me. By the end of the session, he was so wiped out that he refused to go on. She had to bribe him with an ice cream gift card. Then she has the nerve to tell me she believed her results were "valid".
The only thing that saved me was hearing my ES remark that the test he was given for this was not the same IQ test he was given 3 years ago. I was so upset, I didn't even catch that. I immediately said I wanted the same test done. We weren't comparing apples to apples. They wanted me to sign something that said I agreed with their results and we would change the IEP accordingly. Guess what? I refused to sign it. I was bawling almost the entire rest of the meeting (which was almost 2 hours). They kept talking like it was a done deal and at one point I remember saying very loudly that he wasn't dumb and I was not going to let them label him as MR. I said that he's already in the system, why does the label need to change. The director said that it more "accurately describes him" to people that would be reading his IEP for services. I said no it didn't. That any IQ test they gave him would not consider any of the amazing science things he does, or what he builds after he takes something apart. He has working memory problems, probably dyslexia (which they don't even test for) and trouble organizing multiple things in his head. All things needed for reading, he struggles with. I do not believe for one second that this is a child who will never learn more than he knows now. He has auditory processing issues that need to be dealt with that they aren't dealing with.
They started talking about programs in the district that would help him. They want him to be in a life skills class. A life skills class would teach how to tie your shoes, or write your name and address. This would not be an environment that would foster his curiosity, let him explore and create, let him discover things. Here at home I push him. I make him write things that he doesn't want to write. These people probably think I am wasting my time teaching him any math beyond simple addition and subtraction, or reading about history or our science. How could I ever consider putting him in a class like this? It would destroy what learning ability he does have because they would have no expectations. Why would they care if he knew about our solar system, or Lewis and Clark or how to skip count by 9's?
I've researched online about parent advocates for IEP meetings. I still haven't figured out how to get one. But I know that no parent should ever feel what I did when I was blindsided in this meeting. I'm still waiting to hear from the special ed department about further testing. I said that I wanted several more tests done before I'd sign anything (and I still don't have to agree with their label). Everything happens at a snail's pace in the world of education. It's very frustrating that this hasn't been figured out and he's in 5th grade. I keep imagining him in 6 or 7 years and feel like time is running out (or it's already too late) to help him. Books I've been reading say 10 or 11 is pretty much the age that a child's brain connections are all made. We had time up until this point to grow those areas and make new connections, but they are wasting time.
By the time he gets the help he needs, he'll be 18. He'll be 18 and won't know how to read.
Someday when the kids are grown and I have no purpose, my purpose is going to be a parent advocate for parents at IEP meetings. I have 3 years of experience with IEP's on the other end: I wrote them for all my deaf students. I sat in on parent meetings and told of the student's progress. I answered questions about goals and test scores. But that didn't prepare me for what happened at my IEP meeting. After cramming what should have been 8 or 9 hour's worth of testing into 6, I went into this meeting hopeful about help I was going to get to help Holland learn to read. I was going to assert myself and straight out ask for what I needed. I'm kind of an oddity to them, I'm sure. I homeschool my kid and he's on an IEP. No one knows who legally is required to help me. The charter school he's enrolled in doesn't have the resources (no on-site resource teacher) and the district says he's not enrolled in one of their schools to help him. Makes you want to scream.
But the fact that I didn't have someone on "my side" sitting with me while the tester told me that my child is no longer considered "learning disabled" and they want to label him "mentally retarded" was something that I couldn't even comprehend. Who would ever think that this incredibly curious, hard-working, industrious kid would ever test as mentally disabled? She started out by telling me that "she believed the test scores to be accurate and valid". It didn't matter that Holland had never met her, she was 30 minutes late to our first meeting, he refused at first to even cooperate and wouldn't work if I wasn't sitting in the room. The second session was spent playing tag. We went to the tester's school and she came to ours. Fourty-five minutes of waiting for her to show up and then she did more testing. The last day we tested, I had all three kids with me. By the end of the session, he was so wiped out that he refused to go on. She had to bribe him with an ice cream gift card. Then she has the nerve to tell me she believed her results were "valid".
The only thing that saved me was hearing my ES remark that the test he was given for this was not the same IQ test he was given 3 years ago. I was so upset, I didn't even catch that. I immediately said I wanted the same test done. We weren't comparing apples to apples. They wanted me to sign something that said I agreed with their results and we would change the IEP accordingly. Guess what? I refused to sign it. I was bawling almost the entire rest of the meeting (which was almost 2 hours). They kept talking like it was a done deal and at one point I remember saying very loudly that he wasn't dumb and I was not going to let them label him as MR. I said that he's already in the system, why does the label need to change. The director said that it more "accurately describes him" to people that would be reading his IEP for services. I said no it didn't. That any IQ test they gave him would not consider any of the amazing science things he does, or what he builds after he takes something apart. He has working memory problems, probably dyslexia (which they don't even test for) and trouble organizing multiple things in his head. All things needed for reading, he struggles with. I do not believe for one second that this is a child who will never learn more than he knows now. He has auditory processing issues that need to be dealt with that they aren't dealing with.
They started talking about programs in the district that would help him. They want him to be in a life skills class. A life skills class would teach how to tie your shoes, or write your name and address. This would not be an environment that would foster his curiosity, let him explore and create, let him discover things. Here at home I push him. I make him write things that he doesn't want to write. These people probably think I am wasting my time teaching him any math beyond simple addition and subtraction, or reading about history or our science. How could I ever consider putting him in a class like this? It would destroy what learning ability he does have because they would have no expectations. Why would they care if he knew about our solar system, or Lewis and Clark or how to skip count by 9's?
I've researched online about parent advocates for IEP meetings. I still haven't figured out how to get one. But I know that no parent should ever feel what I did when I was blindsided in this meeting. I'm still waiting to hear from the special ed department about further testing. I said that I wanted several more tests done before I'd sign anything (and I still don't have to agree with their label). Everything happens at a snail's pace in the world of education. It's very frustrating that this hasn't been figured out and he's in 5th grade. I keep imagining him in 6 or 7 years and feel like time is running out (or it's already too late) to help him. Books I've been reading say 10 or 11 is pretty much the age that a child's brain connections are all made. We had time up until this point to grow those areas and make new connections, but they are wasting time.
By the time he gets the help he needs, he'll be 18. He'll be 18 and won't know how to read.
Thursday, March 4, 2010
I hate laundry
I'm totally ignoring it. Is that legal? Are there Laundry Police somewhere that will come crashing into my house with Shout stain remover in squirt guns because I refuse to admit we have a problem? I cannot keep up with it. I need a separate room for it. I actually do have a separate room, but it's not big enough to fold the clean clothes. So the process goes something like this:
Big mess of clothes on the floor. In between getting three kids ready to drive Romania to the bus stop and fixing my face, I dump a load of wash into the machine. I may even decide to take the clean clothes out of the dryer and dump them on my bed.
Come home. Do school. Clean up Holland's experiments, computer cords, chicken coop project (ask my mom about that one), typewriter motor (still playing with this thing), eat lunch, do more school, let Holland loose around the house while I try to spend some one-on-one time with Egypt. Clean up more messes of Holland's. Try to remember we need to eat tonight and thaw some type of meat. Try to contain Holland and tell him we are not in fact done with school. Go pick up Romania. Sit down and ignore the fact that it's 5 and I still don't have dinner figured out.
Walk upstairs to see the giant laundry mess on the hall floor. Put the clean clothes into the dryer. Walk into our room and notice the sky-high pile of clean clothes on the ironing board. These never get put away. I find there are more important things to do than put away clean clothes. I'd rather read a book to my child, or bake some cookies, or look at something with our new loupes for science. I feel guilty and frustrated and tired looking at this pile of clothes. Last weekend, bless him, Super Hero says "My goal is to have all these clothes clean by the end of the weekend." Awww. What a nice, child-like thing to say about laundry. Do men actually think laundry ever gets "done". Like it will somehow end? Sure. If we all are nekkid, then laundry will be done. Of course, it doesn't help that I have three kids who at some point have accidents and I'm changing sheets.
So I will just have to let the Laundry Police storm my house and shame me into finishing the laundry. That's the only way it will get done. There are just too many other things to do. Last week, the school OT came over to do some testing on Holland for his 3 year IEP eval. I know she means well, she only works 2 days a week and her kid (notice it's not plural) is gone all day at school, but she asked if I thought about giving the kids more chores. I tried so hard not to laugh. It's probably a combination of several things: I homeschool, so the kids are actually HOME; I have children, one more than the other two, that has to be moving every second of the day, creating, building, planning, that it's impossible to stay on top of all the clutter from him; and I just don't have the energy to follow through with the chores I DO give them. I've done lists and charts and frankly, I've come to the conclusion that my energy cannot be spent on worrying if my house is perfect. That just means that I can't have much company right now! Life is a season and this season will be over and I will have missed it if I spend all my time cleaning!
Growing up, my mom had a fridge magnet that said "an immaculate house is the sign of a misspent life." Amen!
Big mess of clothes on the floor. In between getting three kids ready to drive Romania to the bus stop and fixing my face, I dump a load of wash into the machine. I may even decide to take the clean clothes out of the dryer and dump them on my bed.
Come home. Do school. Clean up Holland's experiments, computer cords, chicken coop project (ask my mom about that one), typewriter motor (still playing with this thing), eat lunch, do more school, let Holland loose around the house while I try to spend some one-on-one time with Egypt. Clean up more messes of Holland's. Try to remember we need to eat tonight and thaw some type of meat. Try to contain Holland and tell him we are not in fact done with school. Go pick up Romania. Sit down and ignore the fact that it's 5 and I still don't have dinner figured out.
Walk upstairs to see the giant laundry mess on the hall floor. Put the clean clothes into the dryer. Walk into our room and notice the sky-high pile of clean clothes on the ironing board. These never get put away. I find there are more important things to do than put away clean clothes. I'd rather read a book to my child, or bake some cookies, or look at something with our new loupes for science. I feel guilty and frustrated and tired looking at this pile of clothes. Last weekend, bless him, Super Hero says "My goal is to have all these clothes clean by the end of the weekend." Awww. What a nice, child-like thing to say about laundry. Do men actually think laundry ever gets "done". Like it will somehow end? Sure. If we all are nekkid, then laundry will be done. Of course, it doesn't help that I have three kids who at some point have accidents and I'm changing sheets.
So I will just have to let the Laundry Police storm my house and shame me into finishing the laundry. That's the only way it will get done. There are just too many other things to do. Last week, the school OT came over to do some testing on Holland for his 3 year IEP eval. I know she means well, she only works 2 days a week and her kid (notice it's not plural) is gone all day at school, but she asked if I thought about giving the kids more chores. I tried so hard not to laugh. It's probably a combination of several things: I homeschool, so the kids are actually HOME; I have children, one more than the other two, that has to be moving every second of the day, creating, building, planning, that it's impossible to stay on top of all the clutter from him; and I just don't have the energy to follow through with the chores I DO give them. I've done lists and charts and frankly, I've come to the conclusion that my energy cannot be spent on worrying if my house is perfect. That just means that I can't have much company right now! Life is a season and this season will be over and I will have missed it if I spend all my time cleaning!
Growing up, my mom had a fridge magnet that said "an immaculate house is the sign of a misspent life." Amen!
Tuesday, February 23, 2010
The Typewriter
I had to show you what we've been up to today. The ever-persistent project guy was at it again. Yesterday he found a book at the library "Building your own Robot". I said, "only you could find a book about that!" He immediately decided he wanted to build something. Of course. But I didn't have time to look through it and there are always too many materials that we don't have. But today after he was done with his schoolwork, he came to me again and asked to build something. I said we could look through the book and decide which project we wanted to do. I really doubted we had many of the supplies that would be required.
Right away we found a project he wanted to do and it seemed I had most of the stuff. I said we would need to get a dowel and some wooden wheels from the craft store, but everything else we had. The directions even said to find an old machine with a motor and take it apart to get the motor. Can you believe I actually had a machine for just that purpose? Months ago a friend from church gave me an old (30 pounder) electric typewriter. I let the kids play with it for awhile but didn't tell them they could take it apart. I'm glad we saved it. Today Holland and I spent over 2 hours taking apart this thing. The first thing we had to do was take the cover off. There were no screws and no visible way of removing the cover. Holland runs to the garage and comes back with a crowbar! We pried the cover off and went to work. We just looked for screws and bolts and started taking them off. Finally, we were able to get the motor off and Holland got all his electrical wires and doo-dads and went to work. Within minutes he had the thing running, spinning cardboard and cooling us off while we ate pancakes for dinner. (My pathetic attempt at dinner. I was busy with the typewriter and that's as good as it got tonight).
He was so excited that we got it off and of course tomorrow I have to produce some wheels and dowels to put the robot together. Here's some pictures of the gutted typewriter and Holland with his trophy motor.
Monday, February 8, 2010
The Key
To save my sanity, several locks have been purchased and installed in our house to prevent Holland from breaking and entering. Don't bother telling me I should just tell him to not go in. It didn't work and with his impulsiveness, it's not worth it to me to keep saying something over and over just to have it ignored. So there are keyed locks on the pantry, my bedroom and finally Romania's bedroom. I mentioned this several times to Super Hero because I was tired of having Holland go into his brother's room when he was at school. I was tired of wallets disappearing, Game Boys going missing and things rearranged. Romania was so excited when he was given his own key and able to lock it and know that his brother and sister couldn't get in without his permission.
It's come in real handy since we've acquired this new mutant frog and tiny fish. In the short span of time that Romania was home, unlocked his door and fed his frog some boxelder bugs, Holland had filled a metal container with water so the frog could bathe. This container is not leak-proof and even though there was a towel underneath it, it still leaked water all over the floor.
But you just can't put it past Holland to try to find some way around the system. Today after Egypt's eye appointment and running one errand, I was getting lunch ready and noticed the microwave was on. I hadn't put anything in and was smelling something. Apparently, the locksmith was making his own key. My guess it was to hack into his brother's room. He had taken clay from our low-fire clay bag and made an impression of a key into the clay and was baking it. I'm sure some day I'll find some humor in his creativeness, but at the time I was irritated that once again he was bucking the system and attempting to violate his brother's space.
I didn't want to encourage this type of behavior so I didn't ask what he was planning to use to actually make the key.
It's come in real handy since we've acquired this new mutant frog and tiny fish. In the short span of time that Romania was home, unlocked his door and fed his frog some boxelder bugs, Holland had filled a metal container with water so the frog could bathe. This container is not leak-proof and even though there was a towel underneath it, it still leaked water all over the floor.
But you just can't put it past Holland to try to find some way around the system. Today after Egypt's eye appointment and running one errand, I was getting lunch ready and noticed the microwave was on. I hadn't put anything in and was smelling something. Apparently, the locksmith was making his own key. My guess it was to hack into his brother's room. He had taken clay from our low-fire clay bag and made an impression of a key into the clay and was baking it. I'm sure some day I'll find some humor in his creativeness, but at the time I was irritated that once again he was bucking the system and attempting to violate his brother's space.
I didn't want to encourage this type of behavior so I didn't ask what he was planning to use to actually make the key.
Homeschool Buyers Co-op
The Homeschool Buyer Co-op is a free homeschooling organization for both new and veteran homeschoolers. Co-op membership is free and confidential, and entitles homeschooling families to discounts from hundreds of educational suppliers. The Co-op also sponsors "Group Buys" for curriculum packages that can save homeschooling families lots of money. On the site you'll find lots of free information, such as databases of free curriculum, field trips, and educational contests and scholarships.
This site has been a great resource - I've purchased some deeply discounted curriculum, found out about field trips in our area, looked up information on homeschooling laws for my state. They also provide links to free websites and activities. It's been a great time-saver to have all this information in one place and know that people work so hard to find this for busy homeschool families.
Click here for more information.
This site has been a great resource - I've purchased some deeply discounted curriculum, found out about field trips in our area, looked up information on homeschooling laws for my state. They also provide links to free websites and activities. It's been a great time-saver to have all this information in one place and know that people work so hard to find this for busy homeschool families.
Click here for more information.
Sunday, February 7, 2010
Memoirs of a Crazy Mom
This is what my blog should be called. So says my sister. I was just chatting with her and telling her about the rat my 10 year-old just bought. While out on a pet store run with his dad and brother and sister. You wonder how this could be accomplished? Let me tell you - it's kind of complicated.
First, you tell your husband to take Romania to the pet store to pick out a frog and fish from an I.O.U from Christmas. He had a beta and a frog a couple years ago that didn't last very long, so I kept promising him another pair. So yesterday, Super Hero takes him to the local pet store to purchase said frog and fish. Now, this next part is my fault (Super Hero would probably argue that ALL of it is my fault, but whatever). He took all three chillun's with him. And Romania came home with a giant frog (giant as is 4" instead of a tiny water frog to keep the beta company). And he didn't get a beta. He got some fish that cost $4 and I don't even know what kind of fish it is. The frog is called a "Dumpy" frog. But Romania is calling it "Dur" because it was dirty when he saw it. I keep trying to convince him to change the name to Dumpy but he won't do it.
Normally when humans buy pets, they find out what kind of food they need to eat. But Super Hero did not do this. Which is why he needed a second trip to the pet store to find out what to feed the critters. My only involvement was calling the store to find out their hours. I didn't think I should have to get involved with this project. But apparently when dads are left to purchase pets and take kids places, they come home with mutant animals and stowaways. When they got home this afternoon, Egypt and Romania ratted on their brother. And that is such a good intended pun - Holland actually purchased a rat. I do not know where he got money. He actually owes me money for breaking some things. But while Super Hero was helping Romania figure out what type of food he needed, Holland was off buying a rat. When Super Hero figured out what happened, he couldn't get Holland back in the store to return it. So when he got home, naturally it was to become MY problem and I was told I needed to return the rat. I said "thanks, but no thanks". Holland said we couldn't return it because he ripped up the receipt.
And you think I'm buyin' this kid a dog? Think again.
First, you tell your husband to take Romania to the pet store to pick out a frog and fish from an I.O.U from Christmas. He had a beta and a frog a couple years ago that didn't last very long, so I kept promising him another pair. So yesterday, Super Hero takes him to the local pet store to purchase said frog and fish. Now, this next part is my fault (Super Hero would probably argue that ALL of it is my fault, but whatever). He took all three chillun's with him. And Romania came home with a giant frog (giant as is 4" instead of a tiny water frog to keep the beta company). And he didn't get a beta. He got some fish that cost $4 and I don't even know what kind of fish it is. The frog is called a "Dumpy" frog. But Romania is calling it "Dur" because it was dirty when he saw it. I keep trying to convince him to change the name to Dumpy but he won't do it.
Normally when humans buy pets, they find out what kind of food they need to eat. But Super Hero did not do this. Which is why he needed a second trip to the pet store to find out what to feed the critters. My only involvement was calling the store to find out their hours. I didn't think I should have to get involved with this project. But apparently when dads are left to purchase pets and take kids places, they come home with mutant animals and stowaways. When they got home this afternoon, Egypt and Romania ratted on their brother. And that is such a good intended pun - Holland actually purchased a rat. I do not know where he got money. He actually owes me money for breaking some things. But while Super Hero was helping Romania figure out what type of food he needed, Holland was off buying a rat. When Super Hero figured out what happened, he couldn't get Holland back in the store to return it. So when he got home, naturally it was to become MY problem and I was told I needed to return the rat. I said "thanks, but no thanks". Holland said we couldn't return it because he ripped up the receipt.
And you think I'm buyin' this kid a dog? Think again.
Thursday, February 4, 2010
Lewis and Clark and Seaman
This past week, we have been reading about Lewis and Clark and their westward journey. The reference book I have - TruthQuest History - has been a remarkable resource for books. Everything I've checked out from the library has been a hit. I have had to return some of them unread because there are just so many good books that we can't possibly read them all. All the books end up being read aloud due to Holland's reading level, but I've enjoyed everything and have learned a lot too!
The latest books have been about Lewis and Clark's trusty dog, a Newfoundland named Seaman. The first book we read was from the dog's perspective and Holland just loved hearing the tales of adventures from this lovable dog. His favorite was when Seaman jumped in the river to capture squirrels that were migrating the river. It was mighty funny to picture this huge 150 pound dog grabbing these tiny squirrels in his mouth and giving them to his master and then swimming back over and over.
Holland is so excited about the Newfoundland dog, that he had me researching them online. It gets very dangerous to listen to his begging - I even found a breeder in Oregon. But I assured him we were NOT getting a dog. I've been saying that for years. But he went ahead and called gramma and told her we were getting a dog.
I said "the dog would have to live outside. Look - it sheds really bad." Why am I even having this conversation with him? We are NOT getting a dog.
"Lewis paid $20 back in 1803 for this dog, Holland. Today they cost $1200." Again, why am I even saying this? It's not like we're getting a dog.
"They need to be brushed for 20 minutes every day. You don't even brush YOUR teeth everyday!" He assures me he will.
"They have webbed paws, great for swimming. We can take him to the lake!", he says. We are NOT getting a dog. "He'll be a good guard dog!"
We are NOT getting a dog.
The latest books have been about Lewis and Clark's trusty dog, a Newfoundland named Seaman. The first book we read was from the dog's perspective and Holland just loved hearing the tales of adventures from this lovable dog. His favorite was when Seaman jumped in the river to capture squirrels that were migrating the river. It was mighty funny to picture this huge 150 pound dog grabbing these tiny squirrels in his mouth and giving them to his master and then swimming back over and over.
Holland is so excited about the Newfoundland dog, that he had me researching them online. It gets very dangerous to listen to his begging - I even found a breeder in Oregon. But I assured him we were NOT getting a dog. I've been saying that for years. But he went ahead and called gramma and told her we were getting a dog.
I said "the dog would have to live outside. Look - it sheds really bad." Why am I even having this conversation with him? We are NOT getting a dog.
"Lewis paid $20 back in 1803 for this dog, Holland. Today they cost $1200." Again, why am I even saying this? It's not like we're getting a dog.
"They need to be brushed for 20 minutes every day. You don't even brush YOUR teeth everyday!" He assures me he will.
"They have webbed paws, great for swimming. We can take him to the lake!", he says. We are NOT getting a dog. "He'll be a good guard dog!"
We are NOT getting a dog.
Saturday, January 23, 2010
Did You Know?
That if Dolley Madison hadn't taken the portrait of George Washington out of the White House before the British burned it in 1814, that we would have nothing from his presidency?
That there are 312 rooms in the White House, but tourists can only visit 7?
That the statue on top of the Capitol building is called "Freedom" and weighs 15,000 pounds?
That the expansion of the Capitol was carried out mainly by slaves?
That Abigail Adams hung her laundry in the unfinished East Room to dry?
I'm loving our TruthQuest History. I love not having to pour through the library catalog to find books that are meaningful and appropriate. And the kids are loving it too!
That there are 312 rooms in the White House, but tourists can only visit 7?
That the statue on top of the Capitol building is called "Freedom" and weighs 15,000 pounds?
That the expansion of the Capitol was carried out mainly by slaves?
That Abigail Adams hung her laundry in the unfinished East Room to dry?
I'm loving our TruthQuest History. I love not having to pour through the library catalog to find books that are meaningful and appropriate. And the kids are loving it too!
Friday, January 22, 2010
Now What?
Ever feel like you work so hard at something and that it's just too late? You spend all this time researching, planning, implementing and revising and still, nothing has worked.
Holland is now in the 5th grade. Physically, he's 5th grade. Academically, he's about 1st grade. Do you know how frustrating that is? To not be able to teach him so he can learn something? After feeling like I hit a brick wall when he was in 2nd grade and enrolling him in a special education class through our district, only to pull him out the following year, it feels like I'm on a moving walkway that is going nowhere. I have tried so many different reading programs with him. He's on an IEP that would seem to indicate he would get the help he needs to manage those deficits. It hasn't made one smack of difference. The only assistance he's received is speech and that's shoddy. We'd get better speech services if we paid for it ourselves. But that's not something we can afford right now. I had to cut out Occupational Therapy and his counseling he was receiving because of our reduced income.
His three year evaluation for his IEP is coming up and there are certain tests I want done to determine if he is dyslexic. Guess what? The school district does not test for dyslexia because they don't recognize it as a learning disability. The school district is only required to do testing to determine eligibility for IEP services. The method that I've found online that will help a dyslexic child is very expensive. Holland's struggles match almost exactly to the warning signs listed on the Bright Solutions for Dyslexia website. One of the things that scared me is the emphasis on early intervention. That children who struggle to read and write shouldn't be dismissed as "late bloomers" or that they will outgrow the struggle to decode. If a child doesn't have intervention by 3rd or 4th grade, it will be 4x's harder to overcome those delays.
The charter school we are involved with doesn't have a resource room available. They don't even have an on-site teacher to help with reading or writing issues. Then the school he would attend if we were doing public school says that it's the charter school's responsibility to provide accommodations. So I can't get the district to admit that he's (probably) dyslexic and I can't get the schools to provide any services. See? Brick wall.
Holland is now in the 5th grade. Physically, he's 5th grade. Academically, he's about 1st grade. Do you know how frustrating that is? To not be able to teach him so he can learn something? After feeling like I hit a brick wall when he was in 2nd grade and enrolling him in a special education class through our district, only to pull him out the following year, it feels like I'm on a moving walkway that is going nowhere. I have tried so many different reading programs with him. He's on an IEP that would seem to indicate he would get the help he needs to manage those deficits. It hasn't made one smack of difference. The only assistance he's received is speech and that's shoddy. We'd get better speech services if we paid for it ourselves. But that's not something we can afford right now. I had to cut out Occupational Therapy and his counseling he was receiving because of our reduced income.
His three year evaluation for his IEP is coming up and there are certain tests I want done to determine if he is dyslexic. Guess what? The school district does not test for dyslexia because they don't recognize it as a learning disability. The school district is only required to do testing to determine eligibility for IEP services. The method that I've found online that will help a dyslexic child is very expensive. Holland's struggles match almost exactly to the warning signs listed on the Bright Solutions for Dyslexia website. One of the things that scared me is the emphasis on early intervention. That children who struggle to read and write shouldn't be dismissed as "late bloomers" or that they will outgrow the struggle to decode. If a child doesn't have intervention by 3rd or 4th grade, it will be 4x's harder to overcome those delays.
The charter school we are involved with doesn't have a resource room available. They don't even have an on-site teacher to help with reading or writing issues. Then the school he would attend if we were doing public school says that it's the charter school's responsibility to provide accommodations. So I can't get the district to admit that he's (probably) dyslexic and I can't get the schools to provide any services. See? Brick wall.
Sunday, January 17, 2010
Cooking Fool
For some reason today, and maybe it was because I finally finished watching "Julie/Julia" last night, I felt like doing some cooking today. I found a website dedicated to gluten free cooking and was inspired by the recipes. And with Super Hero's big snag the other day of 50 pounds of millet gluten free flour, I felt the need to dispose of some of this flour.
The pizza crust recipe called for 6 different types of flour. And in all craziness, I actually had all 6 kinds. No special trips to the store. Millet flour - check. White rice flour - check. Sweet rice flour - check. Tapioca starch - check. Tapioca flour - check. Almond meal - check. And I even had xanthum gum which any gluten free baker knows you absolutely cannot do without if you're baking something that has no gluten. Gluten is this great binder that is missing in all GF flours. So you need a binder. If you look on the list of ingredients for bread products, most likely there is either xanthum gum or guar gum. Thank goodness for Bob's Red Mill. This tiny bag of about 8 ounces cost me $12. But usually a recipe only calls for a teaspoon, so this bag will last me into the next millenium.
The pizza crust was a success. I even had a piece and it wasn't all bad. It's a taste you have to get used to. But the almond meal gave it a nice nutty flavor. I'm going to bag up a bunch of dry ingredients and have them at the ready whenever Holland feels like eating pizza.
I also ended up making dough for an M&M cookie. He got so excited when he saw the picture. The dough is in the fridge and should be ready tomorrow morning. I find nothing wrong with cookies at 10 a.m.
The pizza crust recipe called for 6 different types of flour. And in all craziness, I actually had all 6 kinds. No special trips to the store. Millet flour - check. White rice flour - check. Sweet rice flour - check. Tapioca starch - check. Tapioca flour - check. Almond meal - check. And I even had xanthum gum which any gluten free baker knows you absolutely cannot do without if you're baking something that has no gluten. Gluten is this great binder that is missing in all GF flours. So you need a binder. If you look on the list of ingredients for bread products, most likely there is either xanthum gum or guar gum. Thank goodness for Bob's Red Mill. This tiny bag of about 8 ounces cost me $12. But usually a recipe only calls for a teaspoon, so this bag will last me into the next millenium.
The pizza crust was a success. I even had a piece and it wasn't all bad. It's a taste you have to get used to. But the almond meal gave it a nice nutty flavor. I'm going to bag up a bunch of dry ingredients and have them at the ready whenever Holland feels like eating pizza.
I also ended up making dough for an M&M cookie. He got so excited when he saw the picture. The dough is in the fridge and should be ready tomorrow morning. I find nothing wrong with cookies at 10 a.m.
Friday, January 15, 2010
Super Hero's New Hobby
Since money's been tight, Super Hero has taken to stalking Craigslist. He makes it a point to check every few hours since people add new things all the time. We've come close to snagging several things but people seeking free things are mighty quick. Recently he came home with a piece of wallboard. We actually needed it to fix a hole in Romania's room where the door knob had smashed into the wall. He had to cut a big hole and patch it with a piece about 12" X 12" so it could be attached to studs.
Today before leaving work he checked the freebies section and someone was giving away gluten free flour. Now, if it was a person, I probably wouldn't have wanted this. But there is a new bakery in the Portland area dedicated entirely to gluten-free baking. I checked out their website and it looks delicious! Holland was so excited when he saw baguettes and cookies and pizza crust and pretzels! It's called new cascadia tradtional and they're located fairly close to OMSI. I can't wait to go there and try some of their baked goods.
Today before leaving work he checked the freebies section and someone was giving away gluten free flour. Now, if it was a person, I probably wouldn't have wanted this. But there is a new bakery in the Portland area dedicated entirely to gluten-free baking. I checked out their website and it looks delicious! Holland was so excited when he saw baguettes and cookies and pizza crust and pretzels! It's called new cascadia tradtional and they're located fairly close to OMSI. I can't wait to go there and try some of their baked goods.
Wednesday, January 6, 2010
Need Some New History
I've been scouring blogs and homeschooling sites to find a good history curriculum. No offense to Story of the World, but I'm tired of it. It's too much information scattered all over the place. Sure, it focuses on a specific time period and it seemed to be "creation-centered" in the first two volumes, but by the third installment of "Modern Times", Holland has lost interest. He is unable to read it for himself and I want something that focuses on American History.
I was looking around and found a blog that mentioned a curriculum called TruthQuest History. I went to the website and was reading parent's reviews of the curriculum and how they are using it. It is unlike any curriculum I've found so far. I almost didn't even bother checking it out at Exodus Books. But this one review had me laughing out loud because she was describing her boys and it sounded exactly like Holland! Here's an excerpt of what she had to say about it:
"I will try to give you a peek into our TruthQuest History adventure. I have BOYS that are ALL boy. They are not the kind who sit nicely at a desk and work away quietly at their copywork. No, no, no. These are the kind who crawl behind the furniture as if they were preparing for an ambush while I am reading aloud. They are the kind who can make anything out of paper. I do not jest. My 8-year-old made a working musket out of construction paper, with the ball, rammer, and a little hook place for the rammer. While we do have parameters, don't think that our children sit in 'Circle Time' and listen quietly while I read War and Peace!"
This really piqued my interest because I am constantly (as you know if you faithfully read my blog) intercepting inventions, creations and contraptions. This history curriculum is actually an extensive list of living books pertaining to a specific time period in a specific geographic area. There are no 'lessons', no 'workbook activities' and no 'tests' that are included in the book. The activities that are suggested are called "ThinkWrite" exercises and all you do is READ. What can be more simple than that? I'm so excited about this and really think that this is exactly what Holland needs. We are going to be reading rich, living literature that is God-centered and not elevating man above his right place. I can get on board with that!
I was looking around and found a blog that mentioned a curriculum called TruthQuest History. I went to the website and was reading parent's reviews of the curriculum and how they are using it. It is unlike any curriculum I've found so far. I almost didn't even bother checking it out at Exodus Books. But this one review had me laughing out loud because she was describing her boys and it sounded exactly like Holland! Here's an excerpt of what she had to say about it:
"I will try to give you a peek into our TruthQuest History adventure. I have BOYS that are ALL boy. They are not the kind who sit nicely at a desk and work away quietly at their copywork. No, no, no. These are the kind who crawl behind the furniture as if they were preparing for an ambush while I am reading aloud. They are the kind who can make anything out of paper. I do not jest. My 8-year-old made a working musket out of construction paper, with the ball, rammer, and a little hook place for the rammer. While we do have parameters, don't think that our children sit in 'Circle Time' and listen quietly while I read War and Peace!"
This really piqued my interest because I am constantly (as you know if you faithfully read my blog) intercepting inventions, creations and contraptions. This history curriculum is actually an extensive list of living books pertaining to a specific time period in a specific geographic area. There are no 'lessons', no 'workbook activities' and no 'tests' that are included in the book. The activities that are suggested are called "ThinkWrite" exercises and all you do is READ. What can be more simple than that? I'm so excited about this and really think that this is exactly what Holland needs. We are going to be reading rich, living literature that is God-centered and not elevating man above his right place. I can get on board with that!
Friday, January 1, 2010
Sneaky Cats
I'm going to catch those cats in the act. They've made a huge mess of the cat food. I used to have a huge container of cat food securely in this empty plastic litter box. But then I made laundry soap for my sister for Christmas (like that, huh?!) and I didn't have another container. I found a smaller plastic jug with a lid that had a pour spout. I put what I could in the container, put the container under the sink and the rest of the food in a drawer in the laundry room. There was no way this cat was gonna get this food.
She is not hard of smelling. She found the drawer with the bag of food and was scratching at it. She was able to open the cupboard under my sink and dump the container over and knock the lid off. Tonight I put it in another container with a snap lid. And guess what? She opened the cupboard again, knocked the box out and was scratching at it. I got video, but she never got it open. I was hoping only for viewing purposes that she would get it open so I'd have evidence of the craftiness of this cat. She is so not underfed. She must weigh 10 pounds. I gotta put her on my postage scale and see what she weighs.
She is not hard of smelling. She found the drawer with the bag of food and was scratching at it. She was able to open the cupboard under my sink and dump the container over and knock the lid off. Tonight I put it in another container with a snap lid. And guess what? She opened the cupboard again, knocked the box out and was scratching at it. I got video, but she never got it open. I was hoping only for viewing purposes that she would get it open so I'd have evidence of the craftiness of this cat. She is so not underfed. She must weigh 10 pounds. I gotta put her on my postage scale and see what she weighs.
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