not sure if she just doesn't get it, or if it is her way of making pokes at me, but a good friend always seems to question my decisions regarding the level of involvement to social and or academic things for my special needs kids. like i am having my step daughters take private spanish with me and then she is asking if any of the other kids are doing it.
can they even answer a question in english?
can they have a normal conversation in english?
and yet here i go, making excuses and being put on the spot as if i am punishing them or excluding them, when in reality i am the parent and i have decided i am not interested in working on anything more than i already do or HAVE to with them. yeah, like i am going to add bilingualism to their expectations. are you kidding me?!
someday i will defend my rights and turn the finger back to her, as i question the intentions of such statements. basically she doesn't agree with some of the limits i have for parenting expectations to my kids. and she is involved with us, but evidently thinks that i am punishing them for their disability. while really the only one being punished if they were afforded some of these opportunities is me or my budget. i am not going to invest in opportunities when there is such a lack of everyday communication abilities. NOT GOING TO DO IT! i am not sending my boys to youth group retreats because i do not feel, they are at the level to which it is intended and it would cause great anxiety and them to bug out and then i absorb that and it just ISNT WORTH IT! is that fair to them? don't know don't care. when an opportunity becomes a liability i am just not interested. i would have to feel there would be REAL advantages to then commit to that obligation. that is why i am called the mom right? i am in charge! if my boys could make friendships and have real relationships outside of our home i may be more inclined to pay for them to go to social events geared at training them. right now, not on the agenda. if we can figure out elapsed time, maybe i would. whatever, i am just sick of defending my position of non-involvement in certain areas. until you walk my walk and actually live day in and day out- i am not talking about an overnight and the kids playing. i am talking about a power outage or two step directions DAY IN AND DAY OUT WITH NO PROGRESS, you wouldn't spend your time or money on certain things either. so BACK OFF!
Thursday, January 27, 2011
Saturday, January 15, 2011
hmph
i am sad that i dont really have any friends that understand me.
i wish that my kids were not so disabled in such quirky ways.
i wonder what my life would be like had i not gotten wrapped up in that guy.
i think most days my life is really painful.
i try to be focused and purposeful but it doesnt always work.
i am crying because i am alone.
i wish that we were not beaten down with special needs.
i wonder what life would be like if people could see my heart and copy that.
i think normal is over ratted, but i long for that.
i try to be fair, but it just isnt the same no matter what.
i am daydreaming of a lesser responsibility time in my life.
i wish that people did things for me sometimes or that i had a mentor.
i wonder who of my kids will be independent adults.
i think for being thirty something i should be able to spell independent, sentence, and receive
i try to make things simple, really, i do
i am sitting in the dark with lue, lilme, and lilone sleeping. the rest are luckily absent.
i wish that i could always be positive and not get drug down with lies and worldly crap.
i wonder if i will get to have friends some day.
i think lue is my best friend but can't remember his blog name, so hope that is right:)
i try to be a light in the darkness and LIGHT PREVAILS!
i am going to be the best mom these kids could ever have.
i wish that my family would continue to bond and blend and build lasting commitments.
i wonder what the gates of heaven will be like. i will wait upon the LORD.
i think too much.
i say too much.
and write?
never.
i wish that my kids were not so disabled in such quirky ways.
i wonder what my life would be like had i not gotten wrapped up in that guy.
i think most days my life is really painful.
i try to be focused and purposeful but it doesnt always work.
i am crying because i am alone.
i wish that we were not beaten down with special needs.
i wonder what life would be like if people could see my heart and copy that.
i think normal is over ratted, but i long for that.
i try to be fair, but it just isnt the same no matter what.
i am daydreaming of a lesser responsibility time in my life.
i wish that people did things for me sometimes or that i had a mentor.
i wonder who of my kids will be independent adults.
i think for being thirty something i should be able to spell independent, sentence, and receive
i try to make things simple, really, i do
i am sitting in the dark with lue, lilme, and lilone sleeping. the rest are luckily absent.
i wish that i could always be positive and not get drug down with lies and worldly crap.
i wonder if i will get to have friends some day.
i think lue is my best friend but can't remember his blog name, so hope that is right:)
i try to be a light in the darkness and LIGHT PREVAILS!
i am going to be the best mom these kids could ever have.
i wish that my family would continue to bond and blend and build lasting commitments.
i wonder what the gates of heaven will be like. i will wait upon the LORD.
i think too much.
i say too much.
and write?
never.
IEPS go til 21
YiKes!
I learned emancipation language years ago as a child support officer, that support continues until age 18 or graduation through age 21, whichever comes later. But yet in my mind, the countdown, on a bad day. The daydream of life after so many years, was figuring that my boys would graduate as seniors. Not so.
After meeting with a county disabilities worker, she has made it clear that the state law is that both boys receive transition skill building and that is what happens 19-21. So that is good news, and also big news. Not that another couple years will matter at this point; however, just the math of it all- even with bedroom occupancy it makes things different.
Fuzzy's ready for a haircut again. Too bad we think hygiene factors are not compatible with long hair, that seems to be trendy and it would be so much easier! But easy cannot be our goal. No one ever said it would be easy and often times easy is lazy. We are hard working midwestern folk that need to instill that in every aspect of our lives. We are modeling marriage, work ethic, communication, and so many other lessons that we don't even realize. I just hope they dismiss the negatives and take the positives. There may be for the power of prayer!
Then I got Hall now finding me on FB, said I just cannot emotionally handle a relationship, but someday (like in 14 years?) I would love to. I directed her to the blog, not this one of course. Nobody reads this one! This is just for me. My secret diary that is open to the public.
I learned emancipation language years ago as a child support officer, that support continues until age 18 or graduation through age 21, whichever comes later. But yet in my mind, the countdown, on a bad day. The daydream of life after so many years, was figuring that my boys would graduate as seniors. Not so.
After meeting with a county disabilities worker, she has made it clear that the state law is that both boys receive transition skill building and that is what happens 19-21. So that is good news, and also big news. Not that another couple years will matter at this point; however, just the math of it all- even with bedroom occupancy it makes things different.
Fuzzy's ready for a haircut again. Too bad we think hygiene factors are not compatible with long hair, that seems to be trendy and it would be so much easier! But easy cannot be our goal. No one ever said it would be easy and often times easy is lazy. We are hard working midwestern folk that need to instill that in every aspect of our lives. We are modeling marriage, work ethic, communication, and so many other lessons that we don't even realize. I just hope they dismiss the negatives and take the positives. There may be for the power of prayer!
Then I got Hall now finding me on FB, said I just cannot emotionally handle a relationship, but someday (like in 14 years?) I would love to. I directed her to the blog, not this one of course. Nobody reads this one! This is just for me. My secret diary that is open to the public.
Thursday, December 30, 2010
Hoarders in Training
A "clean" closet at my house, in Fuzzy and Buzzy's room- what is all that junk? Necessities, yep.
This is what Fuzzy's underbed collection is. With his little sheepish grin he asks, "what's it matter?" And really it doesn't; however, at this rate it has become clear that cleaning and organization skills are non-existent and I cannot compromise on opportunities to maintain expectations of cleanliness . This of course, is after a many claims that he had cleaned up his things. I just wonder when he has taken some of these items. A full paper, wth? He loves receipts and has been known to want ones he finds in parking lots, random carts, or any other place. He has an emotional fixation with things and finds the most ridiculous things sentimental, all the while disregarding and not caring for things of actual value. Is that just cognitive impairment, RAD, or what? Where are the answers? If we have the answers it might matter...right? Since solutions are not dependent on answers, as my conceptually challenged children have reminded me...I guess it doesn't matter! But my house, my roof, my rules. And someday maybe the rewards can be seen. Key word is MAYBE.
Tuesday, December 28, 2010
Merry Christmas
Sometimes I think that our little Fuzzy acts up around the holidays. They were removed from bio parents, Retardo and Hall, Dec.16 2003. Then put in a shelter, because who wants 6 kids for Christmas? I will someday.
With his cognitive delays though I am not sure if I can give him that much credit either. And he usually is a terd, but around the holidays I feel like I can blame it on something. His ODD shows clear and consistently.
Our Christmas did go well though, it was our first year of celebrating a Christmas birthday for Liltoo and throw in some "violently ill" relatives and we have yet to gather with my maternal side. Christmas gets d-r-a-w-n out for broken families. Some may counter the reality by saying for kids the advantage is double the presents...hmmm...maybe, but either way God did not intent for broken families. The father of lies loves broken families. We will fight til the end that our differences can be accepted and resolved to teach our children what commitment and love is. Our hope is that we will pass the baton to this generation that can understand how to not create broken families.
My pops, after 28 years of sobriety, has fallen off the wagon and is drinking. What a sucker punch. What a tough thing to accept, that this rock of a tough guy, after years and years of standing for something is sipping and sneaking booze. I worked at a sports bar for 5 years and he refused to step foot in there, but he has crumbled and is falling apart.
He is too young for that and my 3 siblings and I are trying to wrap our heads around this and see that he is safe. His wife, bless her heart, seems naive and or borderline enabling to the situation. That he may have had a "slip." He also is showing signs of memory and confusion that I want to urge him to get the Alzheimer test and get treatment if that is happening. His mother is in a memory care unit and is not coherent any longer. The idea of losing my dad and him not knowing me or my kids in a number of years is painful. But then again, such is life. Pain and agony. Brokenness brokenness is what I long for. Brokenness is what I need. Brokenness brokenness is what you want from me. Holiness holiness is what I long for. Holiness is what I need. Holiness holiness is what you want from me. Cleanse me clean me Lord I trust you. May this new year bring the best for all!
With his cognitive delays though I am not sure if I can give him that much credit either. And he usually is a terd, but around the holidays I feel like I can blame it on something. His ODD shows clear and consistently.
Our Christmas did go well though, it was our first year of celebrating a Christmas birthday for Liltoo and throw in some "violently ill" relatives and we have yet to gather with my maternal side. Christmas gets d-r-a-w-n out for broken families. Some may counter the reality by saying for kids the advantage is double the presents...hmmm...maybe, but either way God did not intent for broken families. The father of lies loves broken families. We will fight til the end that our differences can be accepted and resolved to teach our children what commitment and love is. Our hope is that we will pass the baton to this generation that can understand how to not create broken families.
My pops, after 28 years of sobriety, has fallen off the wagon and is drinking. What a sucker punch. What a tough thing to accept, that this rock of a tough guy, after years and years of standing for something is sipping and sneaking booze. I worked at a sports bar for 5 years and he refused to step foot in there, but he has crumbled and is falling apart.
He is too young for that and my 3 siblings and I are trying to wrap our heads around this and see that he is safe. His wife, bless her heart, seems naive and or borderline enabling to the situation. That he may have had a "slip." He also is showing signs of memory and confusion that I want to urge him to get the Alzheimer test and get treatment if that is happening. His mother is in a memory care unit and is not coherent any longer. The idea of losing my dad and him not knowing me or my kids in a number of years is painful. But then again, such is life. Pain and agony. Brokenness brokenness is what I long for. Brokenness is what I need. Brokenness brokenness is what you want from me. Holiness holiness is what I long for. Holiness is what I need. Holiness holiness is what you want from me. Cleanse me clean me Lord I trust you. May this new year bring the best for all!
Saturday, December 18, 2010
Sober house
Lua informed me that she is no longer taking stratera or her bc pills for cramping. She will be in tears this cycle though. Her mom is a nurse but just can't transfer any skills to her own life and so Lua has no structure for even taking medication regularily. Never has. I never liked stratera for her though. She has ADHD symptoms but the stratera made her spacier yet. She also has a TBI. 10 years ago in August, as a 4 year old, Lua fell out a second story window onto concrete and has some affects from the frontal lobe damage.
So now she is sober.
Fuzzy hasn't had anything effective unless we were interested in sedating him.
Buzzy has been off concerta and ADHD meds for a couple years now.
Happy's audiology evaluation indicated that she has some "neurological distractions" that we may consider using concerta for.
Liltoo just got off antibiotics after they didn't work for 4 days on an ear infection and the chiropractor sold me some ear drops (garlic oil, olive oil, and something else...) smells like a hotdish, but she has gotten better.
Lilme should be taking vitamin B2 for sleep improvements.
Lu took trazedone for years to sleep but weaned himself off that and is pretty much anti-med. I am a fan and feel like if there is med that may help why suffer.
There is no trophy for passing on pain killers...why do people want to tough something out if they dont have to? Medications and pharmaceutical progress has been made for a reason.
I know that docs are pill happy and there is no magic pill, but there are times when that is in the best interest and I am all about what works. Sometimes it is trial and error, and also with developing brains there are times when meds are needed more than others.
So now she is sober.
Fuzzy hasn't had anything effective unless we were interested in sedating him.
Buzzy has been off concerta and ADHD meds for a couple years now.
Happy's audiology evaluation indicated that she has some "neurological distractions" that we may consider using concerta for.
Liltoo just got off antibiotics after they didn't work for 4 days on an ear infection and the chiropractor sold me some ear drops (garlic oil, olive oil, and something else...) smells like a hotdish, but she has gotten better.
Lilme should be taking vitamin B2 for sleep improvements.
Lu took trazedone for years to sleep but weaned himself off that and is pretty much anti-med. I am a fan and feel like if there is med that may help why suffer.
There is no trophy for passing on pain killers...why do people want to tough something out if they dont have to? Medications and pharmaceutical progress has been made for a reason.
I know that docs are pill happy and there is no magic pill, but there are times when that is in the best interest and I am all about what works. Sometimes it is trial and error, and also with developing brains there are times when meds are needed more than others.
Respite
The boys, Fuzzy and Buzzy took respite with Funny Uncle. Funny is probably perfect for them too, but wonder how long it will take before he understands the depth of their misunderstandings. They were snowblowing, 4 wheeling, and even got some prepaid phones for an early Christmas gift. Fuzzy already locked his phone up twice, and had been told what NOT TO DO. Yep, he then does it. So sad no phone.
Funny uncle asked after fact if I cared if they have phones. I said no, but that if they are taken away for misuse or what not then I will give it back to him and I hope he didn't spend much, with their electronics obsessions they may not last long.
I told Buzzy, that I would not buy him a cell phone. Just because the world says most 14 year olds have a phone doesn't mean I have to buy him one. Primarily because he was trying to delete text messages and being sneaky. He will lie forever and a day if he (misunderstands to) thinks there may be an advantage for him.
Plus he called birth mom, who in turn thought that he needs contact and went through a borderline harrassing phase of trying to get us to make some committment to her. We are not raising the kids for her, but for them. Of course we are the bad guys though. She has the mentality of an 8 year old though
When the boys were gone I did some cleaning in their room. They are hoarders and have a great need for learning organization. I have a couple little boxes that they can sort and organize with a PCA, I am tapped out on the emotional energy that would require of me. I am coming to terms with what my limits are and need to identify and arrange when other services would better help them than myself.
There was a letter from bio mom, and in one of the little cards she put her #. I took that and cannot have Buzzy calling her. With his autism, he doesn't really care. But she really does and I again, have no emotional energy left for her. Just not a good idea. If their kids hadn't been taken away this wouldn't be an issue. Why do I have to be the bad guy?
Did they think that we would like happily ever after and be neighbors or something? They finally left our area and resorted to the state the kids were taken away from them and where the other 3 are. Maybe they will run into their oldest. I don't even care. Retard could pass any day and bump up the social security.
IV-E federal medical eligibility prevented our kids from getting state insurance til after we finalized (three years them with us!) because bio dad earned too much money. Why would that penalize the kid? After removal and or termination. Legislative flaw. Then now even being terminated social security still counts them as dependents. Seems like the government just can't figure it out...imagine that:)
Funny uncle asked after fact if I cared if they have phones. I said no, but that if they are taken away for misuse or what not then I will give it back to him and I hope he didn't spend much, with their electronics obsessions they may not last long.
I told Buzzy, that I would not buy him a cell phone. Just because the world says most 14 year olds have a phone doesn't mean I have to buy him one. Primarily because he was trying to delete text messages and being sneaky. He will lie forever and a day if he (misunderstands to) thinks there may be an advantage for him.
Plus he called birth mom, who in turn thought that he needs contact and went through a borderline harrassing phase of trying to get us to make some committment to her. We are not raising the kids for her, but for them. Of course we are the bad guys though. She has the mentality of an 8 year old though
When the boys were gone I did some cleaning in their room. They are hoarders and have a great need for learning organization. I have a couple little boxes that they can sort and organize with a PCA, I am tapped out on the emotional energy that would require of me. I am coming to terms with what my limits are and need to identify and arrange when other services would better help them than myself.
There was a letter from bio mom, and in one of the little cards she put her #. I took that and cannot have Buzzy calling her. With his autism, he doesn't really care. But she really does and I again, have no emotional energy left for her. Just not a good idea. If their kids hadn't been taken away this wouldn't be an issue. Why do I have to be the bad guy?
Did they think that we would like happily ever after and be neighbors or something? They finally left our area and resorted to the state the kids were taken away from them and where the other 3 are. Maybe they will run into their oldest. I don't even care. Retard could pass any day and bump up the social security.
IV-E federal medical eligibility prevented our kids from getting state insurance til after we finalized (three years them with us!) because bio dad earned too much money. Why would that penalize the kid? After removal and or termination. Legislative flaw. Then now even being terminated social security still counts them as dependents. Seems like the government just can't figure it out...imagine that:)
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