As in meaning that I we are using lots of hours now, they expire in June and we were told to use them or we will not be able to get services someday if we really need them and it is good for us and the kids.
Tonight they are going over to the new girls and doing a parade among other things, I am sure they enjoy that focused cognitive therapy that we cannot provide. Even Lillu has progressed in certain concepts that make some repeated conversation and general topics beyond my capacity at that point. Having these names really throws me off. I should have picked better ones that have some meaning or something, I am like...what's their name? whatever the little bio boy.
so i need to print and finalize my pca schedule this summer and we are doing 9 hours a week of 1:1, more than we usually do in a month! So i hope that we see some progress for the kids. Fuzzy has been off his rocker lately with the ODD. And we tried zoloft, it didnt work! Now I feel discouraged to meet with the psyciatrist, but really that is what we should do. It is borderline intolerable because it goes with no rhyme or reason and only continually ostracizes him. Excuse me while I go look up that word.
Friday, June 10, 2011
Thursday, June 2, 2011
summer calendar
i am so excited to do my calendar. every summer and every school year, and every new year...I get to get some markers and hash up a clean crisp, empty month. Well they are starting to get scattered and randomly filled with various appointments and obligations.
today my main pca is bringing her summer schedule, and just yesterday I go the boys summer schedule. we will be ready to roll. we are for the first time ever using the hours for a 1:1 theraputic setting with various themes with attempt to improve function that requires assistance to begin with. Sounds like fun, I know...but i really have mixed feelings about that commotion it may bring in the home, that is why we are going to be a set schedule and minimize transitions, those are most annoying around here.
also doing something big, and I am trying not to play the guilt game. but as that therapist said, if people don't understand our needs for respite then they just don't get it and that doesn't matter to me or what we need anyone of us in our family.
we need to go on a vacation setting and get to experience that without the constant chaos. also, the girls, being with their dad every other weekend, and than having so much consumption with the different special needs of each child- well they need to have some time in a less structured environment that things always need to be at home for the best of everyone. following me here...it's just what we are doing. and it should be a great time. i am really looking forward to it. we are doing respite on that friday, and so i will have the whole day to get everyone ready and then. then if uncle or grandma and grandpa don't come up then we will try and sucker a pca into doing it- but waiting on Lue to find out for sure, as it really preferred. Lua has drivers ed in the morning, well she is checking with her friend- evidently the dates were wrong and it is a secret what the real dates are or something. Small town water tower scandal. heard of it? just kidding. but then the girls will get a ride home with someone too. it is a win win. a night of respite, a night of all 8, a night of our regular 6. win win win. put that on your calendar!
today my main pca is bringing her summer schedule, and just yesterday I go the boys summer schedule. we will be ready to roll. we are for the first time ever using the hours for a 1:1 theraputic setting with various themes with attempt to improve function that requires assistance to begin with. Sounds like fun, I know...but i really have mixed feelings about that commotion it may bring in the home, that is why we are going to be a set schedule and minimize transitions, those are most annoying around here.
also doing something big, and I am trying not to play the guilt game. but as that therapist said, if people don't understand our needs for respite then they just don't get it and that doesn't matter to me or what we need anyone of us in our family.
we need to go on a vacation setting and get to experience that without the constant chaos. also, the girls, being with their dad every other weekend, and than having so much consumption with the different special needs of each child- well they need to have some time in a less structured environment that things always need to be at home for the best of everyone. following me here...it's just what we are doing. and it should be a great time. i am really looking forward to it. we are doing respite on that friday, and so i will have the whole day to get everyone ready and then. then if uncle or grandma and grandpa don't come up then we will try and sucker a pca into doing it- but waiting on Lue to find out for sure, as it really preferred. Lua has drivers ed in the morning, well she is checking with her friend- evidently the dates were wrong and it is a secret what the real dates are or something. Small town water tower scandal. heard of it? just kidding. but then the girls will get a ride home with someone too. it is a win win. a night of respite, a night of all 8, a night of our regular 6. win win win. put that on your calendar!
Thursday, May 12, 2011
New Respite Plans
After meeting with a psychologist for Fuzzy, I have again come to terms that respite is okay and is better for our whole family then any snickers of division. People that do not understand what our lives look like and our needs to regroup need not snicker. And if they do, I guess I need to build up that wall.
We are having a new PCA that is interested in respite do a night this weekend. For the first time ever, I am excited because there is no emotional relationship with her and I and so we will get this right the first time, not keep hoping that it works out.
Why doesn't it work out? Because we have felt that the respite used in the past winds up being nothing structured for the kids, and we would like that. Then, our "break" is usually bitter sweet when we realize that they haven't bathed, have icky dirty nails, wrecked clothing and shoes, and other situations that make us feel that the care is not really what we had in mind. This is, and I am so excited. We are going to make it a camp out fun time for them, like a mini vacation...and I can't wait!
I purposely scheduled it for the girls weekend here, but now they likely won't be joining us til Saturday anyhow. They have had lots of drama lately on their time here, so not complaining. Clearly reflects the negativity they are consumed with in their other home. If only we could get them more, but in the mean time we will take what we can get and hope for the best.
So for this I am most excited for the weekend! Fuzzy has been purposely guzzling water to wet through his new pullups because we are having them delivered now from a medical supply company. Then for the 3rd day in a row after "leaking" he lied about the sheets, didn't want them washed!%*#@% if that tells you anything. YikEs!
I am going to valleyfair with Buzzy in June with school, so that will be tons of fun (I really hope because I love that place...please let me enjoy it Buzzy!!) Wishing for this feeling of cheer to continue into the summer when all the kids are home too, not just now at 709 when the 4 have left and the little two are still sawing logs. Have a great day...I know I will!
We are having a new PCA that is interested in respite do a night this weekend. For the first time ever, I am excited because there is no emotional relationship with her and I and so we will get this right the first time, not keep hoping that it works out.
Why doesn't it work out? Because we have felt that the respite used in the past winds up being nothing structured for the kids, and we would like that. Then, our "break" is usually bitter sweet when we realize that they haven't bathed, have icky dirty nails, wrecked clothing and shoes, and other situations that make us feel that the care is not really what we had in mind. This is, and I am so excited. We are going to make it a camp out fun time for them, like a mini vacation...and I can't wait!
I purposely scheduled it for the girls weekend here, but now they likely won't be joining us til Saturday anyhow. They have had lots of drama lately on their time here, so not complaining. Clearly reflects the negativity they are consumed with in their other home. If only we could get them more, but in the mean time we will take what we can get and hope for the best.
So for this I am most excited for the weekend! Fuzzy has been purposely guzzling water to wet through his new pullups because we are having them delivered now from a medical supply company. Then for the 3rd day in a row after "leaking" he lied about the sheets, didn't want them washed!%*#@% if that tells you anything. YikEs!
I am going to valleyfair with Buzzy in June with school, so that will be tons of fun (I really hope because I love that place...please let me enjoy it Buzzy!!) Wishing for this feeling of cheer to continue into the summer when all the kids are home too, not just now at 709 when the 4 have left and the little two are still sawing logs. Have a great day...I know I will!
Monday, May 2, 2011
Happy's IEP
Not really looking forward to that crap today. IEP= Individualized Education Plan. But I am not happy with hers. Her processing and memory impairments are not apparent in the 2nd grade classroom setting and therefore there is a great difference in the girl we are discussing from home to school.
I tell myself that is fine, and when they give her greater independence and less structure- such as at home, they will be surprised to learn that she is not really where they think she is!
The report card was downright false, saying she tells time and communicates well. Really? Have you talked to her lately? Whatever, I will be supportive of her education and just advocate for her to receive services as they are offered to her. I have fought for what she gets as of now. Last year they were not going to test her in communication.
I said they were. They did. The parents is always right, if they are not sure then call in the big dogs. I like big dogs! But Happy is a tricky kid and I understand that her expectations right now are not identifying her specific and quirky challenges. Executive functioning...4th/5th grade? I hate waiting, but unless I want to do it myself I have to just sit and wait. Sit down and shut up is what I have coined the district's roadblocks to qualifications. I can do that, but someday I will not have to and they will see what we see and my baby will keep making improvements with our without their constant understanding of her issues.
So Lue isn't crazy about IEPs but I like numbers and feeling like I am not alone against them, maybe I should see if a PCA will go with me. Lue says he isn't following the meetings always anyhow. I thought it would be good because we have Lua's IEP meeting (they require an annual meeting) next Monday. Thought it would stir up his intellect. Then I decided fine, I am so tired of orchastrating child care and what have you, why should I feel bad of asking my inlaws to babysit? They live less than a mile away, you'd think I could get them weekly. But I hate asking. Lue would rather not go and so I am compensating that idea negatively justifying that he usually doesn't contribute much and of course says the wrong things because I am perfect. haha. I guess it doesn't matter. Right now is not much chance to get anything more for her, so I am fine. I am going to pull out my reading charts they have been half-ass providing me. According to the IEP they are non-compliant as they are not sending them weekly.
Why did I fight for the language to get those weekly reports and then not do anything with them? Well not sure. But for todays meeting I will whip them out to show that their weekly goal of hers to gain improvement and the regression with stagnant weeks does not put her anywhere near they intended her skills to be, so what are they going to do about it?
Likely nothing.
We'll see how today goes. Wonder if I will make it through the meeting without crying about my baby they want to slip on through the cracks with bullshit excuses. Sorry for my language...lack of better terms?!
Have a Stellar Day, my couple readers...if any...to the open space of the unknown where i reach my words and tone to the underlying presence my Lord captures my feelings and cradles me kind, with room to grow and leave behind the pain the tears and all my fears. in the end I will surrender to the highest authority who created the world, beginning and end, alpha omega, in the middle of my little mess I remember how much I am blessed... THANK YOU JESUS!
I tell myself that is fine, and when they give her greater independence and less structure- such as at home, they will be surprised to learn that she is not really where they think she is!
The report card was downright false, saying she tells time and communicates well. Really? Have you talked to her lately? Whatever, I will be supportive of her education and just advocate for her to receive services as they are offered to her. I have fought for what she gets as of now. Last year they were not going to test her in communication.
I said they were. They did. The parents is always right, if they are not sure then call in the big dogs. I like big dogs! But Happy is a tricky kid and I understand that her expectations right now are not identifying her specific and quirky challenges. Executive functioning...4th/5th grade? I hate waiting, but unless I want to do it myself I have to just sit and wait. Sit down and shut up is what I have coined the district's roadblocks to qualifications. I can do that, but someday I will not have to and they will see what we see and my baby will keep making improvements with our without their constant understanding of her issues.
So Lue isn't crazy about IEPs but I like numbers and feeling like I am not alone against them, maybe I should see if a PCA will go with me. Lue says he isn't following the meetings always anyhow. I thought it would be good because we have Lua's IEP meeting (they require an annual meeting) next Monday. Thought it would stir up his intellect. Then I decided fine, I am so tired of orchastrating child care and what have you, why should I feel bad of asking my inlaws to babysit? They live less than a mile away, you'd think I could get them weekly. But I hate asking. Lue would rather not go and so I am compensating that idea negatively justifying that he usually doesn't contribute much and of course says the wrong things because I am perfect. haha. I guess it doesn't matter. Right now is not much chance to get anything more for her, so I am fine. I am going to pull out my reading charts they have been half-ass providing me. According to the IEP they are non-compliant as they are not sending them weekly.
Why did I fight for the language to get those weekly reports and then not do anything with them? Well not sure. But for todays meeting I will whip them out to show that their weekly goal of hers to gain improvement and the regression with stagnant weeks does not put her anywhere near they intended her skills to be, so what are they going to do about it?
Likely nothing.
We'll see how today goes. Wonder if I will make it through the meeting without crying about my baby they want to slip on through the cracks with bullshit excuses. Sorry for my language...lack of better terms?!
Have a Stellar Day, my couple readers...if any...to the open space of the unknown where i reach my words and tone to the underlying presence my Lord captures my feelings and cradles me kind, with room to grow and leave behind the pain the tears and all my fears. in the end I will surrender to the highest authority who created the world, beginning and end, alpha omega, in the middle of my little mess I remember how much I am blessed... THANK YOU JESUS!
Wednesday, April 27, 2011
One Down
One down makes a huge difference. Especially when it is one of the tougher ones! Fuzzy is on a trip with school and it has been nice to have less fighting because of his ocd! We met with a psychiatrist and he was started on zoloft, after nothing at 12.5 and nothing at that doubled, I am feeling confident to discontinue it. We didn't fill out the paperwork and forgot it on our weekend trip, so he is pretty much off that . I don't really think there is a med to help, but might discuss this further with the doc. Then I am not in favor of the therapy sessions either...really- with the DCD are we going to get anywhere anyhow? It'd probably be better to save the energy and use that time for some 1 on 1 anyhow.
Buzzy was convinced that he was bit by a poisonous spider last night and told me that even daddy long legs are poisonous. Yikes, he said that his hand was numb, then pointed to a knuckle and then said it was (with his fingers, about an 1/8 inch) just a little bit numb. I wonder if he went to the nurse when he got to school, I could tell that he didn't trust me that there were no poisonous spiders here.
On the note of school- Buzzy came home with a planets presentation board. Funny thing was that one of the points under each planet was how many earth days their years are. I couldn't help but feel objective as he never remembers how many days are in an earth year. The last time he guessed 7 or 8. Now I wonder if the science project was confusing him, as Mercury has 8 days. Atleast now I know that when he answers that may be correct somewhere in the universe. Again, my satisfaction levels are not too high with public schools at this moment. Home schooling would be so sad though, I love that darn bus!!
So Fuzzy gets home tonight, Buzzy was wondering if I was getting him at 5am this morning at about 630am. I said see, this is why you won't stay home by yourself, you don't understand time. Like is that supposed to be a secret? He was full gripe load yesterday when he had to go with to the girls dance because Lue had a long day and couldn't be home in time. Buzzy said, why can't I stay home alone?! I said because you are not staying home alone, you don't even know what time it is. He then was mad at me, saying he does. So is it unfair of me to bring this to his attention then in the revealing moments of his deficits? Maybe I will never know, if done lovingly then I just hope it supports his understanding of our desires for his safety and well being. It's not like we are making things up!
Buzzy was convinced that he was bit by a poisonous spider last night and told me that even daddy long legs are poisonous. Yikes, he said that his hand was numb, then pointed to a knuckle and then said it was (with his fingers, about an 1/8 inch) just a little bit numb. I wonder if he went to the nurse when he got to school, I could tell that he didn't trust me that there were no poisonous spiders here.
On the note of school- Buzzy came home with a planets presentation board. Funny thing was that one of the points under each planet was how many earth days their years are. I couldn't help but feel objective as he never remembers how many days are in an earth year. The last time he guessed 7 or 8. Now I wonder if the science project was confusing him, as Mercury has 8 days. Atleast now I know that when he answers that may be correct somewhere in the universe. Again, my satisfaction levels are not too high with public schools at this moment. Home schooling would be so sad though, I love that darn bus!!
So Fuzzy gets home tonight, Buzzy was wondering if I was getting him at 5am this morning at about 630am. I said see, this is why you won't stay home by yourself, you don't understand time. Like is that supposed to be a secret? He was full gripe load yesterday when he had to go with to the girls dance because Lue had a long day and couldn't be home in time. Buzzy said, why can't I stay home alone?! I said because you are not staying home alone, you don't even know what time it is. He then was mad at me, saying he does. So is it unfair of me to bring this to his attention then in the revealing moments of his deficits? Maybe I will never know, if done lovingly then I just hope it supports his understanding of our desires for his safety and well being. It's not like we are making things up!
Friday, April 1, 2011
one more day
Spring break with the boys, only Monday left yet. I love school so much, I can't believe I consider home schooling. When would I get a break? It is funny, because with their developmental delays sometimes they act 2,4,6,or 8; yet, sometimes they can be age appropriate. But that is not so often!
Yesterday Buzzy had a PCA help him prepare a hotdish for supper. I think the 3 hours that took wasn't worth the reward of not having to cook dinner. How selfless do we have to be? His advantages possibly outweigh my disadvantages, but seriously? Hogging up my kitchen for 3 hours, I wish there were a test kitchen he could use or something. The day before she had taken him to the store and he bought the ingredients we didn't have. He was so giddy when he came home. I struggle with finding compassion sometimes because the father of lies tells me they are annoying. But how sad is that if your own mother finds you annoying and somedays it feels like they can't do anything right. Yuck! That is my problem, and I cannot make it theirs. Fake it til you make it. I do love them more than words and am passionate for their success, but so many barriers with their communication, cognitive and processing skills, I would offer that I wasn't really cut out for this. I know that God chose me to be their mom and he knew what types of challenges I would bear, and by the power of his name my reward will be in heaven!
I am free in Christ, and even though I would ask if he ever was surrounded by retarded people all day, likely not; however, to show love and be love are what I am called to do- even when it is hard!
Something else on my mind, is the international vs. domestic adoption opinions I have. I think I will do a post on my other blog to discuss this, but many people from our church are all worried about kids on reese's rainbow and one little girl from russia costs 33k! Can you imagine! And I know so much more than these kindhearted people, that she likely has FASD and will be such a challenge and financially too. No secondary coverage there folks! At one point, if it wasn't for our secondary medical coverage our therapy bills would have exceeded 900$ a month! Now, the state doesn't occur any expense either since they have to write it off- that is why dentists don't like MA and they are in a different category then medical professionals that cannot deny patients.
So there are some rants for now...and looking forward to my little routines to come on Tuesday after a weekend and only 2 more days of my boys here looking for direction.
Therapy news, all 3 are done. Buzzy capped out with skills are 8-9 years old (mind you he is nearly 15,) Happy as well- after over 6 years of therapy it just isn't helping on those areas that we will likely forever accomodate. I dropped Fuzzy because I don't want to use my PCA hours with just him in the car for an hour and we are doing some home programming now.
Happy Friday!! Blessings to the world!!
Yesterday Buzzy had a PCA help him prepare a hotdish for supper. I think the 3 hours that took wasn't worth the reward of not having to cook dinner. How selfless do we have to be? His advantages possibly outweigh my disadvantages, but seriously? Hogging up my kitchen for 3 hours, I wish there were a test kitchen he could use or something. The day before she had taken him to the store and he bought the ingredients we didn't have. He was so giddy when he came home. I struggle with finding compassion sometimes because the father of lies tells me they are annoying. But how sad is that if your own mother finds you annoying and somedays it feels like they can't do anything right. Yuck! That is my problem, and I cannot make it theirs. Fake it til you make it. I do love them more than words and am passionate for their success, but so many barriers with their communication, cognitive and processing skills, I would offer that I wasn't really cut out for this. I know that God chose me to be their mom and he knew what types of challenges I would bear, and by the power of his name my reward will be in heaven!
I am free in Christ, and even though I would ask if he ever was surrounded by retarded people all day, likely not; however, to show love and be love are what I am called to do- even when it is hard!
Something else on my mind, is the international vs. domestic adoption opinions I have. I think I will do a post on my other blog to discuss this, but many people from our church are all worried about kids on reese's rainbow and one little girl from russia costs 33k! Can you imagine! And I know so much more than these kindhearted people, that she likely has FASD and will be such a challenge and financially too. No secondary coverage there folks! At one point, if it wasn't for our secondary medical coverage our therapy bills would have exceeded 900$ a month! Now, the state doesn't occur any expense either since they have to write it off- that is why dentists don't like MA and they are in a different category then medical professionals that cannot deny patients.
So there are some rants for now...and looking forward to my little routines to come on Tuesday after a weekend and only 2 more days of my boys here looking for direction.
Therapy news, all 3 are done. Buzzy capped out with skills are 8-9 years old (mind you he is nearly 15,) Happy as well- after over 6 years of therapy it just isn't helping on those areas that we will likely forever accomodate. I dropped Fuzzy because I don't want to use my PCA hours with just him in the car for an hour and we are doing some home programming now.
Happy Friday!! Blessings to the world!!
Thursday, March 3, 2011
Taxes
that is an advantage to having more kids! I have a wish list every year, even of course that money was long spent ago. I guess they know who to give it to! We have to be the spenders. If we are going to be living in this economy, we should atleast have some fun too though. And by that I mean to be investing your money in your kids.
I am going to start several kids on piano lessons when I get a cool electric piano.
I will book lodging for vacations, that would otherwise not have a dime.
I will try to book my own travels, since Lue doesn't fly. Yeah right, wait til he really wants to go somewhere.
Hiring new PCAs now, we just want to have a couple more on hand and the county implied that if we don't use hours now, then even as soon as after another year, we may be ineligible for the hours. Something about ADLs. I just cant' keep up on those things, people are paid to do that...right! Regardless, she said that she will not have much grounds to refer us to any programs if we are not even using our hours now. Well not sure how much I could stand. Unless they are gone with them, often I find it annoying to be home too. Then I can hear if things are going downhill and they want to be on my lap. I LOVE THE BREAK!! But not as much as I love the kids!! They are so awesome and I sometimes let myself drag on their challenges and let that consume me; however, what consumes me is their resilience, love, innocence, effort and participation.
Probably a new bag.
Maybe a newer van.
Maybe an investment into a family business.
A bench with storage for my front door. The current bench will be used for our table seating.
Storage shelves for kids and family things to better organize the closets for wardrobe/flipping. I am a flipper with a big sale and make $600 while getting first dibs and buying various things for any of my wardrobes. Giving up on the steppers though. I can't find anything they like anymore and they are better off bringing things from their moms house.
BTW i am free and am no longer having a near 40 in my house play mom and live out of laundry baskets because of (MY DIAGNOSED) cognitive emotional related impairments to making decisions, actually I don't know where that lies in the DSM4. is that's what it is called? Again, people are paid for that:) life is good!
I am going to start several kids on piano lessons when I get a cool electric piano.
I will book lodging for vacations, that would otherwise not have a dime.
I will try to book my own travels, since Lue doesn't fly. Yeah right, wait til he really wants to go somewhere.
Hiring new PCAs now, we just want to have a couple more on hand and the county implied that if we don't use hours now, then even as soon as after another year, we may be ineligible for the hours. Something about ADLs. I just cant' keep up on those things, people are paid to do that...right! Regardless, she said that she will not have much grounds to refer us to any programs if we are not even using our hours now. Well not sure how much I could stand. Unless they are gone with them, often I find it annoying to be home too. Then I can hear if things are going downhill and they want to be on my lap. I LOVE THE BREAK!! But not as much as I love the kids!! They are so awesome and I sometimes let myself drag on their challenges and let that consume me; however, what consumes me is their resilience, love, innocence, effort and participation.
Probably a new bag.
Maybe a newer van.
Maybe an investment into a family business.
A bench with storage for my front door. The current bench will be used for our table seating.
Storage shelves for kids and family things to better organize the closets for wardrobe/flipping. I am a flipper with a big sale and make $600 while getting first dibs and buying various things for any of my wardrobes. Giving up on the steppers though. I can't find anything they like anymore and they are better off bringing things from their moms house.
BTW i am free and am no longer having a near 40 in my house play mom and live out of laundry baskets because of (MY DIAGNOSED) cognitive emotional related impairments to making decisions, actually I don't know where that lies in the DSM4. is that's what it is called? Again, people are paid for that:) life is good!
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