I got an email today from social services. I had turned in additional paperwork a couple weeks ago to see if that changed Holland's denial status. Today the gal said that she wanted to let me know that they finally received Holland's hospital records from San Diego - the ones that mysteriously disappeared and then were found.
It's good news and bad news. The records didn't change his status for denial, BUT...
they are requesting additional testing! Yea!!! This means (I think) that he will have some kind of neuropsychological testing done - hopefully on their dime. Months ago I had filled out paperwork to have neuro testing done, but it was just overwhelming what needed to be acquired to even be put on the wait list. So they are putting the process on hold until additional tests are done and looked at. I'm hoping this also means we can be pushed to the front of the line and don't have to wait months to be seen.
So thankful that we are still going to be considered for disability. This is the only time that you hope the tests turn out bad!
Wednesday, January 26, 2011
Sunday, January 23, 2011
Feed the Homeless
A few weeks ago, a friend came to me and said her son wanted to make sandwiches to feed the homeless in downtown Portland. Last year, he earned money and bought the stuff he needed and made about 100 sandwiches. His parents drove him around Portland and he handed out sandwiches.
This year, he wanted to do something more. So they decided they would get donations from people at church, make sandwiches and put them in H2O bags. About five years ago, two of the pastor's daughters came up with this ministry to homeless by providing them with a lunch sack with a non-perishable food item, socks, water bottle, Gospel tract and Rescue Mission meal voucher. The girls sell the bags at church for $3 and this year some of our Treasureland kids are going to make sandwiches, purchase these H2O bags and give them out to homeless in Portland in Februrary.
This morning's service was a combined service with both of our church locations in attendance. We meet across the street at the West Linn High School to accommodate all the people. We arrived early and Egypt and Romania and 5 other kids stood by the doors as people came in. They held signs and coffee cans with information about their project. The kids did a great job and in just one service, raised close to $75 (which is probably a very low estimate!) Next week we'll take the kids to each church location and ask for more donations to be able to buy as many H20 bags and sandwiches as we can. In February around President's Day, we'll make sandwiches and then head out to downtown and let these kids minister!
This year, he wanted to do something more. So they decided they would get donations from people at church, make sandwiches and put them in H2O bags. About five years ago, two of the pastor's daughters came up with this ministry to homeless by providing them with a lunch sack with a non-perishable food item, socks, water bottle, Gospel tract and Rescue Mission meal voucher. The girls sell the bags at church for $3 and this year some of our Treasureland kids are going to make sandwiches, purchase these H2O bags and give them out to homeless in Portland in Februrary.
This morning's service was a combined service with both of our church locations in attendance. We meet across the street at the West Linn High School to accommodate all the people. We arrived early and Egypt and Romania and 5 other kids stood by the doors as people came in. They held signs and coffee cans with information about their project. The kids did a great job and in just one service, raised close to $75 (which is probably a very low estimate!) Next week we'll take the kids to each church location and ask for more donations to be able to buy as many H20 bags and sandwiches as we can. In February around President's Day, we'll make sandwiches and then head out to downtown and let these kids minister!
Tuesday, January 18, 2011
The Cleaning Fool
Everyday after getting the boys off to their different schools, Egypt asks me if we can do something "fun". Somehow we always end up baking. I'm not sure how that happens. When Holland was home schooled, we were always disassembling things. We took apart an old electronic typewriter so he could use the motor (remember the motorized sit and spin? or the make-shift weed eater?); he had me build a pit kiln in the backyard so he could make his own nature print tiles; he made robots out of IKEA boxes, electricity wires, motors and thing-a-ma-bobs; he made a luge out of boxes and two skateboards. So I thought with Egypt home, things would be low-key.
Nix that idea. We've been baking, cleaning and puzzling for about two weeks now. Every day for about 10 days, we made muffins, bundt cakes, cookies, gluten free cookies, brownies and bread. Then I would bore her with "school". She kept complaining that she wanted to do something fun. I told her we couldn't bake all day, but I was happy to do that for one project during the day.
That desire to bake has been replaced by the need to clean. And more specifically, iron. She loves to sweep the kitchen floor, wash windows, vacuum, and straighten up the boys' rooms. This morning after the boys left and she had her bath, she starts trying to convince me we need another project. She wanted to do something "fun". I said I needed to finish some laundry organizing (Super Hero built me a new shelf and clothes rod in my tiny laundry room) and then iron a few things. I said we could do some school and then she could pick something to do. It had to be "fun". I asked her what "fun" was. She said, "like ironing!"
Nix that idea. We've been baking, cleaning and puzzling for about two weeks now. Every day for about 10 days, we made muffins, bundt cakes, cookies, gluten free cookies, brownies and bread. Then I would bore her with "school". She kept complaining that she wanted to do something fun. I told her we couldn't bake all day, but I was happy to do that for one project during the day.
That desire to bake has been replaced by the need to clean. And more specifically, iron. She loves to sweep the kitchen floor, wash windows, vacuum, and straighten up the boys' rooms. This morning after the boys left and she had her bath, she starts trying to convince me we need another project. She wanted to do something "fun". I said I needed to finish some laundry organizing (Super Hero built me a new shelf and clothes rod in my tiny laundry room) and then iron a few things. I said we could do some school and then she could pick something to do. It had to be "fun". I asked her what "fun" was. She said, "like ironing!"
Thursday, January 13, 2011
He's Alive!
Well, it appears that Holland was born afterall. I finally got my act together and went to Social Services to turn in more paperwork for my appeal. In case I forgot to mention this before, the application for Holland's disability was denied. I've heard this is very common. They want to weed out all the flim-flam and make it so difficult to get any assistance and hope you'll give up. I can see why people do give up. Navigating this system has been horrible. No one wants to help you, you get misdirected answers, and people generally feel all you want is money.
After I got the denial letter, I immediately got on the phone with Oregon Disability Rights and talked to someone about what to do. I sent them a bunch of paperwork on past testing. But they didn't get the last two pages of something we had done 5 years ago. The psychologist that did the testing is impossible to get ahold of and hasn't returned either phone call from me. So I'm still waiting to get them what they need.
In the meantime, someone from Social Services (probably the state level at this point) calls me and asks me a bunch of questions (but I wasn't given the chance to ask any) and says basically we will have a conference call on a specific date to talk about the appeal. It was irritating that he wouldn't give me any other information. So the conference call came and they told me why Holland wouldn't qualify. I told them repeatedly that I understood he wouldn't qualify from the bipolar diagnosis. I told them his learning disabilities were going to prevent him from functioning as an adult. They told me his IQ was too high. I pointed out that the testing they had was not the entire picture. The testing they had was from the current IEP, which wouldn't have been a problem, except that Holland had had testing back in February of 2010 and I was told at that meeting that he was "mentally retarded". Something very hard to hear that I actually fought against putting in his IEP. I requested more testing since I didn't think those results were accurate. The testing was done under stressful circumstances, in long sessions and with a person he'd never met and had trouble taking instruction from. In both testing situations, he scored "extremely low", "very low" and "below average" on many things. He had a few jumps in scores that showed he was above his age for logic. The thing the conference call people said was his "overall" picture was that of a kid with learning disabilities, but not developmental disabilities.
I said I also was trying to get ahold of his birth records from San Diego where he was born. I had been told that the hospital could not find those records. I knew he was exposed to drugs and alcohol during pregnancy and it was a matter of finding those documents. I called our lawyer and asked if she had any records that would indicate drug use. She actually had paperwork from a social worker in San Diego that showed birth mom admitted to alcohol and meth use during her pregnancy. The records indicated that she was "clean" at the birth, as was Holland. But she had been in the hospital for three weeks because her water broke early. So of course she wouldn't have drugs in her system at that point. The fact that she admitted to it was a big plus. Although I don't think it shows the true amount of what was consumed.
The conference call people said I could ask for an extension and get those documents and have them faxed to them. So yesterday, I had social services fax those papers and when the gal was giving me back my copies, said "You must have put pressure on the hospital for those records." I told her that the socialworker paperwork was actually from my lawyer. I didn't get what she was talking about. She explained again that the hosiptal did in fact have his records and needed another request sent out and they would send them to her. I couldn't believe it. How did they find them when they were adament about not having them? Someone, somewhere put pressure on them to look harder. The social worker told me it was really good I had documents proving that birth mom abused drugs and alcohol.
Now I just have to wait for the appeals people to call me back. Hopefully with good news that my appeal has been accepted and we can move forward.
After I got the denial letter, I immediately got on the phone with Oregon Disability Rights and talked to someone about what to do. I sent them a bunch of paperwork on past testing. But they didn't get the last two pages of something we had done 5 years ago. The psychologist that did the testing is impossible to get ahold of and hasn't returned either phone call from me. So I'm still waiting to get them what they need.
In the meantime, someone from Social Services (probably the state level at this point) calls me and asks me a bunch of questions (but I wasn't given the chance to ask any) and says basically we will have a conference call on a specific date to talk about the appeal. It was irritating that he wouldn't give me any other information. So the conference call came and they told me why Holland wouldn't qualify. I told them repeatedly that I understood he wouldn't qualify from the bipolar diagnosis. I told them his learning disabilities were going to prevent him from functioning as an adult. They told me his IQ was too high. I pointed out that the testing they had was not the entire picture. The testing they had was from the current IEP, which wouldn't have been a problem, except that Holland had had testing back in February of 2010 and I was told at that meeting that he was "mentally retarded". Something very hard to hear that I actually fought against putting in his IEP. I requested more testing since I didn't think those results were accurate. The testing was done under stressful circumstances, in long sessions and with a person he'd never met and had trouble taking instruction from. In both testing situations, he scored "extremely low", "very low" and "below average" on many things. He had a few jumps in scores that showed he was above his age for logic. The thing the conference call people said was his "overall" picture was that of a kid with learning disabilities, but not developmental disabilities.
I said I also was trying to get ahold of his birth records from San Diego where he was born. I had been told that the hospital could not find those records. I knew he was exposed to drugs and alcohol during pregnancy and it was a matter of finding those documents. I called our lawyer and asked if she had any records that would indicate drug use. She actually had paperwork from a social worker in San Diego that showed birth mom admitted to alcohol and meth use during her pregnancy. The records indicated that she was "clean" at the birth, as was Holland. But she had been in the hospital for three weeks because her water broke early. So of course she wouldn't have drugs in her system at that point. The fact that she admitted to it was a big plus. Although I don't think it shows the true amount of what was consumed.
The conference call people said I could ask for an extension and get those documents and have them faxed to them. So yesterday, I had social services fax those papers and when the gal was giving me back my copies, said "You must have put pressure on the hospital for those records." I told her that the socialworker paperwork was actually from my lawyer. I didn't get what she was talking about. She explained again that the hosiptal did in fact have his records and needed another request sent out and they would send them to her. I couldn't believe it. How did they find them when they were adament about not having them? Someone, somewhere put pressure on them to look harder. The social worker told me it was really good I had documents proving that birth mom abused drugs and alcohol.
Now I just have to wait for the appeals people to call me back. Hopefully with good news that my appeal has been accepted and we can move forward.
Friday, January 7, 2011
Holding My Breath
How is it that a month goes by without me blogging? A year ago that would have seemed impossible. I think I had something important to say every day! Yeah. I wish that were the case. But I have some relatively good news about Holland. We switched him to a new med. Well, not entirely new. He's been on it before and beats me as to why we took him off it. But another med he was on caused a 15 pound weight gain in a month and a half! Doc thought it was probably a combination of a growth spurt and the medication. But once he was taken off it, in less than 3 weeks, he had dropped five pounds. And I really think it was making him all wonky. He just didn't feel good and the medicine was making it worse.
He's back on Abilify for three weeks, and I've been noticing things over the past 8 to 10 days that have been very encouraging. I've always known he's got a very caring heart. He truly wants others to feel comfortable and be happy. And he's really been able to do that. If one of his siblings is hurt, he's running around looking for bandaids or a blanket. When I was sick on Christmas Eve, he brought me ice water with a straw. One time he made me scrambled eggs. And he's controlling his temper so much better. His tolerance for frustration is showing signs of improving and he's able to switch activities and not come unglued.
This is a far cry from just a month ago when things were so bad I was considering some pretty drastic measures. Praying that we can keep him on this med for awhile and he can be successful. And we also need to find a new doctor. Super Hero's insurance changed again and our current psych isn't on the list. It's either find someone else, or pay $50 each visit! Yow-zar!
He's back on Abilify for three weeks, and I've been noticing things over the past 8 to 10 days that have been very encouraging. I've always known he's got a very caring heart. He truly wants others to feel comfortable and be happy. And he's really been able to do that. If one of his siblings is hurt, he's running around looking for bandaids or a blanket. When I was sick on Christmas Eve, he brought me ice water with a straw. One time he made me scrambled eggs. And he's controlling his temper so much better. His tolerance for frustration is showing signs of improving and he's able to switch activities and not come unglued.
This is a far cry from just a month ago when things were so bad I was considering some pretty drastic measures. Praying that we can keep him on this med for awhile and he can be successful. And we also need to find a new doctor. Super Hero's insurance changed again and our current psych isn't on the list. It's either find someone else, or pay $50 each visit! Yow-zar!
Thursday, December 9, 2010
School, School, School. Sigh
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.
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.
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.
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