Hard to believe that this is the last day of yet another year, but even more so, yet another decade...
What's happened to the time...
I moved...
Had twins...YIKES!
Got married again...and didn't have a honeymoon... :(
Bought and sold too many cars...
Bought a house...
Started a blog...something I never thought I'd do....
Changed jobs four times within the same organization...
Found a wonderful church home...
Changed my sewing room around more times than I can count on my fingers and my toes...
Too many UFO's ... (unfinished objects for those that don't sew)...
Got a Facebook page...another never thought I'd do that...
Hopefully more than halfway to getting Jamie to a place that can really help...
Gotten more outspoken publicly about how cruddy the services for kids like him really are...
Helped finish an addition on the house after DH had back surgury because it had to be finished...
Learned more about self-employment that I didn't like....
And a whole bunch more stuff too....but this is getting lengthy....
One of these days I will figure out how to get this thing to show pictures at the top in the slideshow box....
That can go in the resolutions file...along with keeping the kids well because this year alone has been awful....seven bouts of strep and we are now doctoring the third documented case of pneumonia...
Maybe the house is making us sick???? It still needs new drywall and major insulation improvements...and windows...and roof work...and...and..and.... Good thing there is another decade starting...
Thursday, December 31, 2009
Tuesday, December 29, 2009
2010...I promise to do better
Good golly...where has the time gone...Christmas has come and gone and I have posted nothing since Thanksgiving time.
We are still not a whole lot closer to getting Jamie placed. We still have all the Level 4's to go. I have to call one or two who are being particularly difficult....maybe I will tackle that today since my "good" serger seems to have gone on the fritz. I am hoping it is simply a power cord as suggested by my "friends" on http://www.sewingmamas.com/ . I love that site. A bunch of friendly, idea filled people. I even got major ideas for all those last minute gifts I had to make.
Anyway...I was going to go to The Hughes Center for Exceptional Children in Danville, VA, but in the process of getting the twins ready to leave the house to go and visit, they decided that no one under 13 was allowed on their campue. So, that has totally nixed the idea that Jamie might be able to be placed closely. It's sad that he will have to be 6.5 hours away. I'm not comfortable with him being that far away, but short of a spot opening up at FACT in Jacksonville, NC, we are stuck sending him to TN. The center in TN is awesome, don't get me wrong, and we will be very blessed by the services he will receive while he is there...it's just that is it so far away.
Christmas was a total fiasco with Jamie. We went Christmas day having been told by the dr that we could "carry" Jamie his presents, but it didn't happen that way. The receptionist at the desk doesn't seem to care to much for us. It's ok, her behavior has made the feeling pretty mutual. So upon leaving I called the dr on Christmas day. I suspect he was none to happy to have had his day interrputed by an upset parent. He said he would take care of it. The receptionist's attitude was no better the next day when we returned to have "special" visitation with Jamie so we could have "Christmas" with him a day late. She even ended up cursing at Gary. That issue remains to be settled. It just seems that the longer he is there, the more issues that arise.
Well....off to play with my serger with a mind of it's own....and promises to keep better postings...I think a daily dose of writing would do me well.....
We are still not a whole lot closer to getting Jamie placed. We still have all the Level 4's to go. I have to call one or two who are being particularly difficult....maybe I will tackle that today since my "good" serger seems to have gone on the fritz. I am hoping it is simply a power cord as suggested by my "friends" on http://www.sewingmamas.com/ . I love that site. A bunch of friendly, idea filled people. I even got major ideas for all those last minute gifts I had to make.
Anyway...I was going to go to The Hughes Center for Exceptional Children in Danville, VA, but in the process of getting the twins ready to leave the house to go and visit, they decided that no one under 13 was allowed on their campue. So, that has totally nixed the idea that Jamie might be able to be placed closely. It's sad that he will have to be 6.5 hours away. I'm not comfortable with him being that far away, but short of a spot opening up at FACT in Jacksonville, NC, we are stuck sending him to TN. The center in TN is awesome, don't get me wrong, and we will be very blessed by the services he will receive while he is there...it's just that is it so far away.
Christmas was a total fiasco with Jamie. We went Christmas day having been told by the dr that we could "carry" Jamie his presents, but it didn't happen that way. The receptionist at the desk doesn't seem to care to much for us. It's ok, her behavior has made the feeling pretty mutual. So upon leaving I called the dr on Christmas day. I suspect he was none to happy to have had his day interrputed by an upset parent. He said he would take care of it. The receptionist's attitude was no better the next day when we returned to have "special" visitation with Jamie so we could have "Christmas" with him a day late. She even ended up cursing at Gary. That issue remains to be settled. It just seems that the longer he is there, the more issues that arise.
Well....off to play with my serger with a mind of it's own....and promises to keep better postings...I think a daily dose of writing would do me well.....
Sunday, November 22, 2009
Another one of "those" days
Poor Jamie....
We did get "another" call from the hospital today. Jamie was put in isolation for near an hour for kicking a peer and a staff member (over his lunch tray) …so…it looks like he is not as stable as we thought…or anyone else for that matter. He's cycling again….first the argumentativeness kicks in, then the aggression comes on….his moods…well they will probably be way out of whack by mid week. They have rooms for that there. Here at our house, we have dented walls where he kicked and would bang his head. He tore the blinds out of the window in one fit. We are afraid he will go after a window some day and really get hurt. Can't put him in the only room in the house that doesn’t have windows either…that's two of the bathrooms and that's just plain not safe….not to mention that he weighs more than I do now and there is no way in one of his fits that I could control him enough to get him to his room where he could pitch a royal fit..
I wish I could move mountains to make what we KNOW needs to happen...to happen. I wish I could wave a magic wand and it all would be the way it needed to be.
It's one of those things....I know that God has gotten us this far with him...finally to a dr who won't give up until he can get to Jamie somewhere that has the best chance to help him be what God intended him to be... I have to keep the faith that this is all going to happen....I have to keep fighting for my son even if there is no fight left in me because he can't do it for himself.....
We did get "another" call from the hospital today. Jamie was put in isolation for near an hour for kicking a peer and a staff member (over his lunch tray) …so…it looks like he is not as stable as we thought…or anyone else for that matter. He's cycling again….first the argumentativeness kicks in, then the aggression comes on….his moods…well they will probably be way out of whack by mid week. They have rooms for that there. Here at our house, we have dented walls where he kicked and would bang his head. He tore the blinds out of the window in one fit. We are afraid he will go after a window some day and really get hurt. Can't put him in the only room in the house that doesn’t have windows either…that's two of the bathrooms and that's just plain not safe….not to mention that he weighs more than I do now and there is no way in one of his fits that I could control him enough to get him to his room where he could pitch a royal fit..
I wish I could move mountains to make what we KNOW needs to happen...to happen. I wish I could wave a magic wand and it all would be the way it needed to be.
It's one of those things....I know that God has gotten us this far with him...finally to a dr who won't give up until he can get to Jamie somewhere that has the best chance to help him be what God intended him to be... I have to keep the faith that this is all going to happen....I have to keep fighting for my son even if there is no fight left in me because he can't do it for himself.....
Saturday, November 21, 2009
It's been a long few days
We have had a couple of pretty intense meetings the past couple of days. The beginning of the week started off with Debbi receiving a phone call stating that the case manager had been told by the hospital's Social Worker that there was another upcoming court hearing next Thursday. We sort of knew that couldn't be correct because that would make it Thanksgiving, and the courts are closed that day.
So, we first had to tackle Jamie's IEP as if he were getting released, the way his IEP was written and the way the school was set up, Jamie was destined for immediate failure and we refuse to send him into that situation. So, we took the camcorder to the meeting, and had invited to the meeting, but not gotten confirmation back, from an autism specialist...and were very excited to see that she did indeed show up! Truly a blessing as not nearly as much would have been accomplished. Granted, there is still a LONG way to go, but it's getting workable. It's amazing how accountable people become when there will be a permanent record. But seriously, it did get tense, especially when one of the Sr. Administrator's for the county tried to tell me that Jamie wouldn't be taught on his grade level. I stopped her in her tracks. It is their job to teach him at his grade level in the setting in which he requires to show growth and success. I think the school finally realizes we are not going to back down. I am also equally as sure that they will be extremely excited to learn that they probably will not have to execute his IEP as he will probably go directly from the hospital to the residential setting.
We have received in writing a statement from the doctor, that he will not release Jamie to any program unless we as the parent's and him as the treating physician are in agreement that it is in Jamie's best interest. I was floored when my husband passed that to me in yesterdays meeting. After the meeting, and after all the confusion was dispelled, we got down to business... The email below is one we have sent to MANY legislators and news reporting professionals late last night/early this morning. It was suggested that due to the beauraucratic hoops that have to be jumped through to get a child placed out of state because no where in the state can truly help him, it would be a good idea to start lighting some major "political" fires. We know our son is not the ONLY child out there like this, and every child deserves the best chance he can have...
'We would be interested in talking with any or all of you about our son and our journey through the MH/DD/MR maze. He is a twelve year old autistic, bi-polar child with CP. We too, like the story of the McLeod family featured in the Cary News recently, have had major issues with Special Education services in Wake County Schools. I (the mom) am also in a bit of a precarious position as I work for the school system. However, our bigger beef is with the whole entire County and its lack of support to parents of children with special needs and the lack of access to appropriate medical care. Our son is currently hospitalized at Holly Hill (since 10/20/09) after becoming psychotic in his second "therapeutic" foster care home where he was placed to help him learn more appropriate behaviors. His first therapeutic foster placement ended rather abruptly because he suffered a broken arm and received no medical care for 10 days. That is a story all in itself. It was investigated by a neighboring counties CPS department and quickly squelched; we suspect because the "foster mom" was a Wake County CPS worker.
Jamie has no place to go within this state. He is stuck in Holly Hill, where in two weeks time he gained 20 lbs, his cholesterol levels have escalated, and caused further issues with his already weakened ankles that he has because of his Cerebral Palsy.
There is only ONE treatment facility in this state that could take him because of his dual diagnoses….but they are full and don't know when placement will open up because so many step down facilities have been closed due to the dramatic budget cuts within MR/DD/MH services.
What we had initially been told would be a three week process taking about 20 hours per week to complete, has grown into a six to 8 week process as we have now learned that we MUST receive a denial letter from EVERY treatment facility in NC that treats children Jamie's age, regardless of what they are designed to handle. If they take mentally retarded children only, we have to have a denial letter, even though Jamie's IQ is still well above that level. If they only take children with sexually deviant behavior, we have to get a denial letter. Most all of the facilities in NC treat children with Mental Retardation, which our son does not suffer from…his IQ is 103 at last testing earlier this spring, or majorly deviant type behavior, which again our son does not yet exhibit. He definitely can get out of control, but his behavior is far from deviant. If even one place says they have a bed and they are willing to take Jamie, not because they truly think they can help him, but because they are greedy for Medicaid $$, we have to either place him there and let it fail, or send him to the facility we have found out of state that can help him at our own expense. Now, even IF we get all 23 or so denial letters in writing, which requires submitting an admissions packet to each facility because they won't give you a written denial letter until you submit a packet, Medicaid may still deny him placement at Camelot for Kids in TN, even with the approval we have already been given by the LME (local management entity) for this type of long term level 4 placement. At this point we have to go to the DMA (sorry I did not catch what that acronym was for) to attempt to demand that the DMA insist that Medicaid pay for Jamie's treatment. Then once all that is done and approved, we have to have some "interstate compact agreement" signed off on by the legislator (whose name we were not told even though we asked), and that is another 80 page packet and can take up to another week and a half. North Carolina does not like to sign off on these agreements because the revenue expended remains outside of the state. However, they are doing nothing to provide appropriate treatment facilities within the state. In fact, many have been shut down leaving little to no wiggle room for a child as complex as our son.
We seriously understand why the case manager doesn't want to do it, but it is also seriously our son's ONLY hope at a REAL chance to become a successful individual in life. It MUST be done. There can be no more quick fixes for Jamie. His psyche can't handle it and frankly, neither can our families. Our son has been out of our home for most of the year, where we had NO clue of his living conditions. Turns out, at the last foster home in which he was placed through Caring Family Network, "his room" was what truly appears to have been an added on "storage" room with a mattress ON THE FLOOR…a mattress…no frame, no box spring…a mattress…in a room so crammed full of the foster family's "stuff" that the door would not open all the way. That is how our son lived and the foster family was getting paid a pretty penny to keep him from the insurance and we were getting billed on top of it!
My husband and I have decided it's time to go to the press and to seek the assistance of any attorney ready to take on the system…because it is all wrong. We are a blended family of eight on a limited income due to my husband being disabled due to a car accident some 18 years ago. Two of our other children are also on the "spectrum".
Some attention, somehow, someway, has to be brought to this. The doctor did tell us today he had never, in all of his 30+ years at the hospital, meet with parents so set on advocating for what was best for their child. Our thoughts on that were…."what happens to all those kids who do not have parents who either don't have the time, the ability or the where with all to stand up to the system and fight for what is good and right and appropriate"… Bottom-line, the system has to change, and services need to be more readily available for these higher functioning, complex children. Granted, Jamie is probably the most medically complex child you will ever meet along this spectrum, but we know we are not the only family facing these difficulties.
Our child can wait no more!"
SO, if any news reporter or political figure reads this blog, or if any lawyer interested in piloting change for the backwards system, wants to contact us, please do....we will respond and we will be your forefront. We are done with accepting that our child is "too complex". Whatever happened to the hypocratic oath these medical professionals take?
So, we first had to tackle Jamie's IEP as if he were getting released, the way his IEP was written and the way the school was set up, Jamie was destined for immediate failure and we refuse to send him into that situation. So, we took the camcorder to the meeting, and had invited to the meeting, but not gotten confirmation back, from an autism specialist...and were very excited to see that she did indeed show up! Truly a blessing as not nearly as much would have been accomplished. Granted, there is still a LONG way to go, but it's getting workable. It's amazing how accountable people become when there will be a permanent record. But seriously, it did get tense, especially when one of the Sr. Administrator's for the county tried to tell me that Jamie wouldn't be taught on his grade level. I stopped her in her tracks. It is their job to teach him at his grade level in the setting in which he requires to show growth and success. I think the school finally realizes we are not going to back down. I am also equally as sure that they will be extremely excited to learn that they probably will not have to execute his IEP as he will probably go directly from the hospital to the residential setting.
We have received in writing a statement from the doctor, that he will not release Jamie to any program unless we as the parent's and him as the treating physician are in agreement that it is in Jamie's best interest. I was floored when my husband passed that to me in yesterdays meeting. After the meeting, and after all the confusion was dispelled, we got down to business... The email below is one we have sent to MANY legislators and news reporting professionals late last night/early this morning. It was suggested that due to the beauraucratic hoops that have to be jumped through to get a child placed out of state because no where in the state can truly help him, it would be a good idea to start lighting some major "political" fires. We know our son is not the ONLY child out there like this, and every child deserves the best chance he can have...
'We would be interested in talking with any or all of you about our son and our journey through the MH/DD/MR maze. He is a twelve year old autistic, bi-polar child with CP. We too, like the story of the McLeod family featured in the Cary News recently, have had major issues with Special Education services in Wake County Schools. I (the mom) am also in a bit of a precarious position as I work for the school system. However, our bigger beef is with the whole entire County and its lack of support to parents of children with special needs and the lack of access to appropriate medical care. Our son is currently hospitalized at Holly Hill (since 10/20/09) after becoming psychotic in his second "therapeutic" foster care home where he was placed to help him learn more appropriate behaviors. His first therapeutic foster placement ended rather abruptly because he suffered a broken arm and received no medical care for 10 days. That is a story all in itself. It was investigated by a neighboring counties CPS department and quickly squelched; we suspect because the "foster mom" was a Wake County CPS worker.
Jamie has no place to go within this state. He is stuck in Holly Hill, where in two weeks time he gained 20 lbs, his cholesterol levels have escalated, and caused further issues with his already weakened ankles that he has because of his Cerebral Palsy.
There is only ONE treatment facility in this state that could take him because of his dual diagnoses….but they are full and don't know when placement will open up because so many step down facilities have been closed due to the dramatic budget cuts within MR/DD/MH services.
What we had initially been told would be a three week process taking about 20 hours per week to complete, has grown into a six to 8 week process as we have now learned that we MUST receive a denial letter from EVERY treatment facility in NC that treats children Jamie's age, regardless of what they are designed to handle. If they take mentally retarded children only, we have to have a denial letter, even though Jamie's IQ is still well above that level. If they only take children with sexually deviant behavior, we have to get a denial letter. Most all of the facilities in NC treat children with Mental Retardation, which our son does not suffer from…his IQ is 103 at last testing earlier this spring, or majorly deviant type behavior, which again our son does not yet exhibit. He definitely can get out of control, but his behavior is far from deviant. If even one place says they have a bed and they are willing to take Jamie, not because they truly think they can help him, but because they are greedy for Medicaid $$, we have to either place him there and let it fail, or send him to the facility we have found out of state that can help him at our own expense. Now, even IF we get all 23 or so denial letters in writing, which requires submitting an admissions packet to each facility because they won't give you a written denial letter until you submit a packet, Medicaid may still deny him placement at Camelot for Kids in TN, even with the approval we have already been given by the LME (local management entity) for this type of long term level 4 placement. At this point we have to go to the DMA (sorry I did not catch what that acronym was for) to attempt to demand that the DMA insist that Medicaid pay for Jamie's treatment. Then once all that is done and approved, we have to have some "interstate compact agreement" signed off on by the legislator (whose name we were not told even though we asked), and that is another 80 page packet and can take up to another week and a half. North Carolina does not like to sign off on these agreements because the revenue expended remains outside of the state. However, they are doing nothing to provide appropriate treatment facilities within the state. In fact, many have been shut down leaving little to no wiggle room for a child as complex as our son.
We seriously understand why the case manager doesn't want to do it, but it is also seriously our son's ONLY hope at a REAL chance to become a successful individual in life. It MUST be done. There can be no more quick fixes for Jamie. His psyche can't handle it and frankly, neither can our families. Our son has been out of our home for most of the year, where we had NO clue of his living conditions. Turns out, at the last foster home in which he was placed through Caring Family Network, "his room" was what truly appears to have been an added on "storage" room with a mattress ON THE FLOOR…a mattress…no frame, no box spring…a mattress…in a room so crammed full of the foster family's "stuff" that the door would not open all the way. That is how our son lived and the foster family was getting paid a pretty penny to keep him from the insurance and we were getting billed on top of it!
My husband and I have decided it's time to go to the press and to seek the assistance of any attorney ready to take on the system…because it is all wrong. We are a blended family of eight on a limited income due to my husband being disabled due to a car accident some 18 years ago. Two of our other children are also on the "spectrum".
Some attention, somehow, someway, has to be brought to this. The doctor did tell us today he had never, in all of his 30+ years at the hospital, meet with parents so set on advocating for what was best for their child. Our thoughts on that were…."what happens to all those kids who do not have parents who either don't have the time, the ability or the where with all to stand up to the system and fight for what is good and right and appropriate"… Bottom-line, the system has to change, and services need to be more readily available for these higher functioning, complex children. Granted, Jamie is probably the most medically complex child you will ever meet along this spectrum, but we know we are not the only family facing these difficulties.
Our child can wait no more!"
SO, if any news reporter or political figure reads this blog, or if any lawyer interested in piloting change for the backwards system, wants to contact us, please do....we will respond and we will be your forefront. We are done with accepting that our child is "too complex". Whatever happened to the hypocratic oath these medical professionals take?
Thursday, November 19, 2009
We must find a way....
to get Jamie here and to get the insurance to agree to pay for it....
http://www.camelotforkids.org/tennessee.html
it is a six hour trip from here, but it is the ONE place that meets all of his needs....they now say that a LEGISLATOR has to sign off on it before it can happen....can you guess where I will be on the wednesday before thanksgiving...yep you guessed it...I'll be at the capitol bldg busting down doors....someone has to listen to what a horrid job they have done at handling this states mental health and DD services!!!
http://www.camelotforkids.org/tennessee.html
it is a six hour trip from here, but it is the ONE place that meets all of his needs....they now say that a LEGISLATOR has to sign off on it before it can happen....can you guess where I will be on the wednesday before thanksgiving...yep you guessed it...I'll be at the capitol bldg busting down doors....someone has to listen to what a horrid job they have done at handling this states mental health and DD services!!!
Monday, November 16, 2009
It's starting
Today was a very good day...or shall I say, has been thus far. It's not over yet :)
We got word from one of the people at the newspapers that they would like to tackle our story. This shall get very, very interesting very quickly I do suspect.
We also have another meeting scheduled for Jamie's school on Thursday morning....not that I expect much to change...they haven't been willing to meet his needs thus far...but we shall see.
They have apparently been putting the kids to be "early" at the hospital because Jamie's not been allowed to call and we haven't been able to get anyone to answer when we have tried to call...it simply rings and rings and rings. The going to bed early thing...that was Jamie's comment...it may or may not be true...but with all that has happened there, I wouldn't put it past them to do such a thing.
Oh well...time to run and finish up dinner :)
We got word from one of the people at the newspapers that they would like to tackle our story. This shall get very, very interesting very quickly I do suspect.
We also have another meeting scheduled for Jamie's school on Thursday morning....not that I expect much to change...they haven't been willing to meet his needs thus far...but we shall see.
They have apparently been putting the kids to be "early" at the hospital because Jamie's not been allowed to call and we haven't been able to get anyone to answer when we have tried to call...it simply rings and rings and rings. The going to bed early thing...that was Jamie's comment...it may or may not be true...but with all that has happened there, I wouldn't put it past them to do such a thing.
Oh well...time to run and finish up dinner :)
Sunday, November 15, 2009
Sunday School
Not really about our fight per say, but interesting none the less...please leave your comments...we are interested in them all... :)
We were on the way to church this morning and DH said, "Look Zach! There's a $125,000 car!" It was a LOTUS, which DH went on to explain is only manufactured in Italy and has to be shipped here. Which brought me to the point of "Why?" I mean seriously??? So we got off on the discussion of 'want vs. need' and DH kept trying to justify why a car such as the LOTUS would be a need.
The church sermon was great, though I had to leave twice...once because I forgot the offering envelope in the car and no sooner than I get back in the kids have to potty...but it was still good...what I heard of it at least... And then we were off to Sunday School. You would think it was a carnival the way the kids race to get to their class. It's nice they like it so much and they are making good friends.
So DH and I head to our class, which right now is discussing the topic of traditions and making memories, but somehow we got off on that LOTUS again...but the conversation did bring us right into our lesson and scripture on "need". It got me thinking about alot of stuff...you know...the kind of stuff you want, and then try to find a way to rationalize that you really need it...and how our house is really "cluttered" with all kinds of that "stuff".
I wonder how it would feel to get rid of all the "stuff"? I wonder how much less complicated life would be w/o it? All that said.... I NEED my sewing things :) No, not really, but they are things I enjoy and I do use them on a regular basis..not just as a creative outlet, but to make clothing for the kids...
We also talked about Manners and children....and a course called "Growing Kids God's Way". Now, there were only four of us there today, DH and myself being two of them, but it is something we want to look into as a group...and would make for an interesting challenge...
How do you handle your kids, manners, speaking to adults and engaging in conversations with adults...do you make you littles learn to do it because it is expected? Do you let them shy out of it? Do you think it's rude if a child shys out of a conversation?? Lots of questions we raised....lots of personal answers...feel free to share your thoughts.
We were on the way to church this morning and DH said, "Look Zach! There's a $125,000 car!" It was a LOTUS, which DH went on to explain is only manufactured in Italy and has to be shipped here. Which brought me to the point of "Why?" I mean seriously??? So we got off on the discussion of 'want vs. need' and DH kept trying to justify why a car such as the LOTUS would be a need.
The church sermon was great, though I had to leave twice...once because I forgot the offering envelope in the car and no sooner than I get back in the kids have to potty...but it was still good...what I heard of it at least... And then we were off to Sunday School. You would think it was a carnival the way the kids race to get to their class. It's nice they like it so much and they are making good friends.
So DH and I head to our class, which right now is discussing the topic of traditions and making memories, but somehow we got off on that LOTUS again...but the conversation did bring us right into our lesson and scripture on "need". It got me thinking about alot of stuff...you know...the kind of stuff you want, and then try to find a way to rationalize that you really need it...and how our house is really "cluttered" with all kinds of that "stuff".
I wonder how it would feel to get rid of all the "stuff"? I wonder how much less complicated life would be w/o it? All that said.... I NEED my sewing things :) No, not really, but they are things I enjoy and I do use them on a regular basis..not just as a creative outlet, but to make clothing for the kids...
We also talked about Manners and children....and a course called "Growing Kids God's Way". Now, there were only four of us there today, DH and myself being two of them, but it is something we want to look into as a group...and would make for an interesting challenge...
How do you handle your kids, manners, speaking to adults and engaging in conversations with adults...do you make you littles learn to do it because it is expected? Do you let them shy out of it? Do you think it's rude if a child shys out of a conversation?? Lots of questions we raised....lots of personal answers...feel free to share your thoughts.
Saturday, November 14, 2009
The beginning of a new fight
This is all new to us...the blogging and the fighting for what is right for our son. Seemingly odd enough none of the news papers are biting on our story...so we will take it on...starting here, and maybe just maybe someone will become interested enough to help or to join our fight. We know we are not alone...
A little back history....we have a 12 year old son who was born prematurely at 31 weeks and 6 days. He spent a LONG time in the NICU, coming out of it with what we thought were little to no ill effects. We were wrong. At 18 months this boy did not walk or talk....he screamed or he laughed, but he did not talk. Allergies to both food and medicine were coming out of the woodwork faster than we could count. He was constantly sick, RSV, pneumonia, ear infections, sinus infections....if it was catchable, he caught it. I quit my job and started sewing from home because, though my employer had been gracious enough to allow me to bring my boy to my job, it was increasingly clear he needed much more attention, and my job also needed more attention. It was an easy transition that also allowed me to be more involved in my other boys schooling at the time too which was a good thing in the long run. At the ripe old age of three, we learned some heart wrenching news...my boy was labeled with Atypical Autism...but the Chief of Neuropsychiatry didn't thing that was all....so an MRI was ordered...and yet another tear into this momma's heart... My boy had suffered a stroke prior to being born and was diagnosed with PVL...periventricular leukomalacia...the brain damage that causes Cerebral Palsy. By three, we had been in speech therapy for over a year, so there was language, so there was hope.....you know that string you tie a knot at the end of and hang onto with dear life...that was my hope. More therapists and more therapists and specialist after specialist....and then we moved. We moved to where we were led to believe that we would be able to get the best services available for this ball of non-stop rollercoaster emotional filled little man.
We were wrong. Since our move, it has been nothing short of a battle to get the appropriate services. You see...this little man was also diagnosed at 4 with Early Onset Bi-Polar disorder. There is alot of debate on diagnosing children of this age with "this" disorder... My response...live with it and you KNOW. The school system fights us, the insurance companies fight us, and the therapists turn us away because he is in their words "too complex". Trust me, I know...I've lived with him...but they go to school for this...they should know how to help. We are not asking for a miracle cure....we are asking for someone to give us the right balance of medication and to help teach him the right tools so that he can somehow learn to cope in "normal" society.... but we have learned....budget cuts have all but taken away that chance. They are the reason that our son is sitting in a mental hospital at the moment thinking we don't want him. We do want him...but we all want to be safe...and we want him safe too. That won't happen at home because the programs have been ended that made it possible for a number of years to him to successfully live at home.
Oh how I could go on and on about how the budget cuts have hurt not only my son but thousands of other across this great state we live in....the legislators don't get it...they don't live it. My challenge...come live a day in my life....live a day in my son's life...then tell me it's still fair that all the programs that enabled him to live safely at home have been cut...
A little back history....we have a 12 year old son who was born prematurely at 31 weeks and 6 days. He spent a LONG time in the NICU, coming out of it with what we thought were little to no ill effects. We were wrong. At 18 months this boy did not walk or talk....he screamed or he laughed, but he did not talk. Allergies to both food and medicine were coming out of the woodwork faster than we could count. He was constantly sick, RSV, pneumonia, ear infections, sinus infections....if it was catchable, he caught it. I quit my job and started sewing from home because, though my employer had been gracious enough to allow me to bring my boy to my job, it was increasingly clear he needed much more attention, and my job also needed more attention. It was an easy transition that also allowed me to be more involved in my other boys schooling at the time too which was a good thing in the long run. At the ripe old age of three, we learned some heart wrenching news...my boy was labeled with Atypical Autism...but the Chief of Neuropsychiatry didn't thing that was all....so an MRI was ordered...and yet another tear into this momma's heart... My boy had suffered a stroke prior to being born and was diagnosed with PVL...periventricular leukomalacia...the brain damage that causes Cerebral Palsy. By three, we had been in speech therapy for over a year, so there was language, so there was hope.....you know that string you tie a knot at the end of and hang onto with dear life...that was my hope. More therapists and more therapists and specialist after specialist....and then we moved. We moved to where we were led to believe that we would be able to get the best services available for this ball of non-stop rollercoaster emotional filled little man.
We were wrong. Since our move, it has been nothing short of a battle to get the appropriate services. You see...this little man was also diagnosed at 4 with Early Onset Bi-Polar disorder. There is alot of debate on diagnosing children of this age with "this" disorder... My response...live with it and you KNOW. The school system fights us, the insurance companies fight us, and the therapists turn us away because he is in their words "too complex". Trust me, I know...I've lived with him...but they go to school for this...they should know how to help. We are not asking for a miracle cure....we are asking for someone to give us the right balance of medication and to help teach him the right tools so that he can somehow learn to cope in "normal" society.... but we have learned....budget cuts have all but taken away that chance. They are the reason that our son is sitting in a mental hospital at the moment thinking we don't want him. We do want him...but we all want to be safe...and we want him safe too. That won't happen at home because the programs have been ended that made it possible for a number of years to him to successfully live at home.
Oh how I could go on and on about how the budget cuts have hurt not only my son but thousands of other across this great state we live in....the legislators don't get it...they don't live it. My challenge...come live a day in my life....live a day in my son's life...then tell me it's still fair that all the programs that enabled him to live safely at home have been cut...
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