I hung up on the school district child study team person who is assigned to us. We have a new person this year who doesn't have a clue about Autism or Timmy. We have been going back and forth for months, everything I say to her she tells me "I have to check with my supervisor". I have repeatedly asked her for this supervisor's name and she won't give it to me. Today I got so frustrated with her, she tried to tell me that Timmy needs socialization and that the program the district is willing to pay for will give him that.
The program is 4 hours per day for 5 weeks, 3 days are spent going on field trips to various locations, 2 days are spent having cookouts, water fights, etc. If we are lucky he gets 30 minutes a day of education. He is then brought to his daycare after this "school" day and when he arrives all of the older children are off on field trips and he is stuck in a 4 yr old room during nap time. Talk about setting him up for failure! He hates nap time, he needs to be with children his age and he will miss all the bonding and fun they will have all their field trips all summer. How is this better for him than an overnight camp with 1-2 hours of one on one tutoring daily and then being with the rest of the campers? I have found a camp which specializes in "communication and social disorders", basically, PDD-NOS, Autism and ADHD and will send him there for the summer.
How can this woman who has spent a total of maybe an hour with my child tell me what is best for him? This woman has now told me to write another letter to the director of Special Services in my district again. No matter that this person hasn't responded to any other letter sent to her. No matter that my child is transported on a bus with teenagers who have slapped him, picked on him, stolen from him and taught him cuss words and all kinds of other special things no 7 year old should even know about. I guess now I have to send this next letter to this director who ignores me certified and registered and maybe this time she will pay attention. Some how I seriously doubt it.
So I did it, I said to her "I am done speaking with you today" and I hung up before I called her the young inexperienced incompetent person I would have if I stayed on the phone, let me tell you it was coming...
Ok so maybe I was a bit stressed, I am getting nailed for ambulance transports to hospitals this past year for Timmy. The ER's insisted on transporting him to the inpatient hospital but failed to put on the bill it was an emergency transport and didn't get authorization from insurance to transport him. Had I failed to allow them to transport Timmy they would have put a 7 day hold on him and done it anyway. It's just all so frustrating and it's such a roller coaster, Help I don't want to be on this ride anymore,,,,,,,,,,,,,,
Thursday, February 26, 2009
Saturday, February 21, 2009
My Award - Sisterhood/Triple Award
My blogger friend Stefanie at "I Brought You In" and Mom's Most Wanted gave me this award for choosing to make a difference in someones life. It's so sweet of her to think of me and I appreciate her kindness and her blogs! Stefanie was even kind enough to guide me through the "award" process, how cool is that?
There are the rules that go along with accepting this award:
1. Put the logo on your blog or post.
2. Nominate 10 blogs which show great Attitude and/or Gratitude(If you don't have 10, its ok.)
3. Be sure to link to your nominees within your post.
4. Let them know they have received this award by commenting on their blog.
5. Share the love and link to this post and to the person from whom you received your award.
Logo - Got it after Stef told me what to do!
Link to the other post - I think it's working!
10 blogs - Ok, here are some, random order
1. Dear Noah - what a great idea to write to your child like this!
2. A Devonshire Design - My baby sister who got me to blog
3. Living Graciously in 3/4 Time - A Wonderful Independent Strong Woman who is so inspirational
4. Mom - Not Otherwise Specified - a wonderful special mom to a special child
5. GFCF Free and Not Starving
- a special mom who does everything she can to help her special child and then shares it with us!
6. Who says 8 is enough? - What an inspirational family!
More to come, I need to take care of Timmy right now!
Friday, February 20, 2009
Let's hope they pass this bill, it's time for a change
Nevada leaders are discussing a bill this legislative session could change the lives of children with autism and those of their families as well.
Assembly Bill 162 would mandate insurance coverage for autism screening and treatment. It can cost as much as $40,000 a year for effective treatment and right now many providers refuse to cover it. Proponents say if we don't pay it now, we'll pay ten times the amount or more later.
Lawmakers, autism advocates, and insurance companies are close to making the bill a reality.
Four-year-old Cameron Kmetz has autism, but you wouldn't know it. Two years of therapy, called behavioral analysis, has transformed him. When Cameron was diagnosed with autism, he couldn't speak. He wouldn't engage with other children and he withdrew into himself.
But now he plays with other kids his age, speaks in full sentences, and laughs... a lot.
Cameron's parents, Marcia and Rick Kmetz, credit his progress to intensive therapy. Cameron logs nearly 30 hours each week with five therapists. The treatment is expensive.
Explains Marcia, "I knew in my heart that this was the right program, that this was going to be the answer for my child, and then he (therapist) said it costs $2,000 a month. We both broke down in tears because we couldn't afford it. We couldn't think about affording it and we knew we had the answer in front of us, but we couldn't have access to it. "
The Kmetzs do receive some help from The Sierra Kids Foundation, but ask other families who have children with autism and they will tell you the burden is a heavy one.
"Therapy for my son is costing $30,000 a year and we just cannot afford that for much longer," said Wendy Hruska, who is caring for a child with autism.
Said parent Kevin Richards," I work six days a week. A lot of the time in the evenings, I take care of the boys so Toni (spouse) can go to work so we can make as much money as we possibly can. Even with as much money as we are making, it still doesn't come up with as much as we need to help Tyler and give him everything he needs."
A piece of legislation could provide financial relief to thousands of Nevada families coping with autism. Assembly Bill 162 would mandate insurance for autism treatment. It's treatment that is, according to experts, vital to children who suffer from autism. That treatment could allow them to live productive lives and become contributing members of society.
The bill has wide support from both Democratic and Republican lawmakers. 49 of the 63 have signed on.
Ralph Toddre is a member of the Nevada Commission on Autism Spectrum Disorders. He is optimistic that teamwork will help pass this legislation.
The legislative team working on this, Assembly-people Leslie, Conklin, Orenschall, and under the direction of one of the best referees in the state, Speaker Buckley - they want this to happen and want to help our kids. It's going to be us working together with not only the legislature, but insurance industry and advocates and I think we can all get together and come up with something that makes sense for everybody, but keeping in mind it's for the best interest of kids and families.
Toddre believes it is those kids and families who will motivate the right people to do the right thing.
We do need to get this done. We do need to get this done this time. It's the right bill at the right time and I think everyone involved believes that both the advocates and insurance industry. I hope when this is all over I can sit there and say, see, I told you, people do do the right thing. If I can't, then shame on all of us.
If the bill passes, Nevada would join a growing number of states that require insurance coverage. Three other pieces of legislation concerning autism are currently being drafted in the state legislature.
Found at this link
And more here
Awareness and detection have grown over the years, but is that the whole story? It’s an issue made timely by insurance debate
By Marshall Allen
Fri, Feb 20, 2009 (2 a.m.)
Sun Archives
* Insurers likely to get bill for autism (2-11-2009)
* No money, no treatment (12-15-2008)
* 5,000 autistic Nevadans, two bills that could help them (6-2-2007)
Sun coverage
* Archive of Sun health stories
Autism and its related disorders are confounding parents, health advocates and scientists. And now, state legislators want insurance companies to step in and help.
The disorders are difficult to identify in children because there is no biological test to confirm their presence. Thus, “autism spectrum disorders” emerge as an ominous specter during early childhood years. An autistic child may respond to the sound of a refrigerator, but not his mother’s voice. He may stare off into space, but never make eye contact with his sister. His senses may by hypersensitive, to the degree that he throws tantrums around bright lights or loud noises.
Identifying the disorders is complicated by the fact that they share characteristics — often causing an impairment in socialization — but don’t share the level of severity. A child with Asperger syndrome may look and sound normal but be unable to recognize social cues, while a severely autistic child may be totally unable to speak.
In hindsight, the signs are clear. But in the course of discovering the problems they are muddled. It can take years before parents realize a child has an autism-related developmental disorder, though experts say it can be reliably diagnosed by age 3.
Once the disorder is diagnosed, early intervention is essential to ensure a child’s development isn’t stunted. Usually this takes the form of occupational and speech therapy that may cost parents tens of thousands of dollars a year out of pocket.
Democrats in the Nevada Assembly introduced a bill this week that would require insurance companies to cover the cost of therapy. Similar legislation has passed in other states. Insurance companies complain that providing autism coverage would increase premiums, which may prompt some employers to stop providing insurance.
Autism spectrum disorders have received increased national attention as their diagnosis has increased. When autism was first described, in 1943, it was assumed that it was a low-incidence disorder, and initial studies in the 1960s suggested the disorders affected perhaps five in 10,000 children, said Catherine Rice, director of the Center for Disease Control and Prevention’s national center for birth defects and developmental disabilities.
In the early years, however, only severely impaired children were placed in the autism spectrum. As researchers have learned more about the diseases, they have broadened the definition of what qualifies as an autism spectrum disorder — and today studies suggest about one in 150 children have some type of autism spectrum disorder.
So are there more autistic children, or is the broadening definition causing more children to be classified as autistic?
It’s impossible to say for sure, Rice said. Awareness of autism is increasing, which leads to more effective identification, but it’s also possible that it’s increasing. Even with the more inclusive definition, the number of autistic children seems to be on the rise, Rice said.
It’s not known what causes autism.
Researchers say environmental factors could contribute to the onset of the disorders. Studies have linked autism to air pollutants, pesticides, pet medications and even drugs used in the birthing process, such as Pitosin, Rice said.
“It could be anything from the exposures in our physical surroundings — chemicals around us in homes, clothes, products, medications we take and food we eat,” Rice said.
Rice said the recognition that environmental factors play a role in causing autism shows that there is common ground in the debate about whether vaccines play a role in the disorders.
“The debate has been more polarizing than it is in reality,” Rice said. “Hopefully there is common ground in recognizing that autism is more complex. It’s not going to be solely explained by biology or genetics or a single environmental cause.”
at this link
Assembly Bill 162 would mandate insurance coverage for autism screening and treatment. It can cost as much as $40,000 a year for effective treatment and right now many providers refuse to cover it. Proponents say if we don't pay it now, we'll pay ten times the amount or more later.
Lawmakers, autism advocates, and insurance companies are close to making the bill a reality.
Four-year-old Cameron Kmetz has autism, but you wouldn't know it. Two years of therapy, called behavioral analysis, has transformed him. When Cameron was diagnosed with autism, he couldn't speak. He wouldn't engage with other children and he withdrew into himself.
But now he plays with other kids his age, speaks in full sentences, and laughs... a lot.
Cameron's parents, Marcia and Rick Kmetz, credit his progress to intensive therapy. Cameron logs nearly 30 hours each week with five therapists. The treatment is expensive.
Explains Marcia, "I knew in my heart that this was the right program, that this was going to be the answer for my child, and then he (therapist) said it costs $2,000 a month. We both broke down in tears because we couldn't afford it. We couldn't think about affording it and we knew we had the answer in front of us, but we couldn't have access to it. "
The Kmetzs do receive some help from The Sierra Kids Foundation, but ask other families who have children with autism and they will tell you the burden is a heavy one.
"Therapy for my son is costing $30,000 a year and we just cannot afford that for much longer," said Wendy Hruska, who is caring for a child with autism.
Said parent Kevin Richards," I work six days a week. A lot of the time in the evenings, I take care of the boys so Toni (spouse) can go to work so we can make as much money as we possibly can. Even with as much money as we are making, it still doesn't come up with as much as we need to help Tyler and give him everything he needs."
A piece of legislation could provide financial relief to thousands of Nevada families coping with autism. Assembly Bill 162 would mandate insurance for autism treatment. It's treatment that is, according to experts, vital to children who suffer from autism. That treatment could allow them to live productive lives and become contributing members of society.
The bill has wide support from both Democratic and Republican lawmakers. 49 of the 63 have signed on.
Ralph Toddre is a member of the Nevada Commission on Autism Spectrum Disorders. He is optimistic that teamwork will help pass this legislation.
The legislative team working on this, Assembly-people Leslie, Conklin, Orenschall, and under the direction of one of the best referees in the state, Speaker Buckley - they want this to happen and want to help our kids. It's going to be us working together with not only the legislature, but insurance industry and advocates and I think we can all get together and come up with something that makes sense for everybody, but keeping in mind it's for the best interest of kids and families.
Toddre believes it is those kids and families who will motivate the right people to do the right thing.
We do need to get this done. We do need to get this done this time. It's the right bill at the right time and I think everyone involved believes that both the advocates and insurance industry. I hope when this is all over I can sit there and say, see, I told you, people do do the right thing. If I can't, then shame on all of us.
If the bill passes, Nevada would join a growing number of states that require insurance coverage. Three other pieces of legislation concerning autism are currently being drafted in the state legislature.
Found at this link
And more here
Awareness and detection have grown over the years, but is that the whole story? It’s an issue made timely by insurance debate
By Marshall Allen
Fri, Feb 20, 2009 (2 a.m.)
Sun Archives
* Insurers likely to get bill for autism (2-11-2009)
* No money, no treatment (12-15-2008)
* 5,000 autistic Nevadans, two bills that could help them (6-2-2007)
Sun coverage
* Archive of Sun health stories
Autism and its related disorders are confounding parents, health advocates and scientists. And now, state legislators want insurance companies to step in and help.
The disorders are difficult to identify in children because there is no biological test to confirm their presence. Thus, “autism spectrum disorders” emerge as an ominous specter during early childhood years. An autistic child may respond to the sound of a refrigerator, but not his mother’s voice. He may stare off into space, but never make eye contact with his sister. His senses may by hypersensitive, to the degree that he throws tantrums around bright lights or loud noises.
Identifying the disorders is complicated by the fact that they share characteristics — often causing an impairment in socialization — but don’t share the level of severity. A child with Asperger syndrome may look and sound normal but be unable to recognize social cues, while a severely autistic child may be totally unable to speak.
In hindsight, the signs are clear. But in the course of discovering the problems they are muddled. It can take years before parents realize a child has an autism-related developmental disorder, though experts say it can be reliably diagnosed by age 3.
Once the disorder is diagnosed, early intervention is essential to ensure a child’s development isn’t stunted. Usually this takes the form of occupational and speech therapy that may cost parents tens of thousands of dollars a year out of pocket.
Democrats in the Nevada Assembly introduced a bill this week that would require insurance companies to cover the cost of therapy. Similar legislation has passed in other states. Insurance companies complain that providing autism coverage would increase premiums, which may prompt some employers to stop providing insurance.
Autism spectrum disorders have received increased national attention as their diagnosis has increased. When autism was first described, in 1943, it was assumed that it was a low-incidence disorder, and initial studies in the 1960s suggested the disorders affected perhaps five in 10,000 children, said Catherine Rice, director of the Center for Disease Control and Prevention’s national center for birth defects and developmental disabilities.
In the early years, however, only severely impaired children were placed in the autism spectrum. As researchers have learned more about the diseases, they have broadened the definition of what qualifies as an autism spectrum disorder — and today studies suggest about one in 150 children have some type of autism spectrum disorder.
So are there more autistic children, or is the broadening definition causing more children to be classified as autistic?
It’s impossible to say for sure, Rice said. Awareness of autism is increasing, which leads to more effective identification, but it’s also possible that it’s increasing. Even with the more inclusive definition, the number of autistic children seems to be on the rise, Rice said.
It’s not known what causes autism.
Researchers say environmental factors could contribute to the onset of the disorders. Studies have linked autism to air pollutants, pesticides, pet medications and even drugs used in the birthing process, such as Pitosin, Rice said.
“It could be anything from the exposures in our physical surroundings — chemicals around us in homes, clothes, products, medications we take and food we eat,” Rice said.
Rice said the recognition that environmental factors play a role in causing autism shows that there is common ground in the debate about whether vaccines play a role in the disorders.
“The debate has been more polarizing than it is in reality,” Rice said. “Hopefully there is common ground in recognizing that autism is more complex. It’s not going to be solely explained by biology or genetics or a single environmental cause.”
at this link
More drugs for our Autistic Children? Are drugs the answer?
Washington, Feb 5 : Researchers at Brown University have discovered a structure in the brain called the Fragile X granule, which offers a potential target for treating certain kinds of autism and mental retardation.
Led by Justin Fallon, professor of neuroscience at Brown, the study''s finding opens a new line of research about potential treatments for autism.
Autism is a neurological disorder that strikes young children and can impair development of social interaction and communication.
"If you are going to treat the disease you need to be able to target the defective elements. The Fragile X granule offers such a target," said Fallon.
Although, autism can be caused by a variety of genetic factors, Fallon''s lab focused on one particular area - the Fragile X protein.
If that protein is mutated, it leads to Fragile X syndrome, which causes mental retardation and is often accompanied by autism.
It is believed that autism and mental retardation are diseases of the synapse, the basic unit of information exchange and storage in the brain.
The researchers focused their study on the Fragile X protein and synaptic connections in healthy mice.
By examining specially prepared sections of mouse brain tissue with high-powered light and electron microscopes, researchers made a number of determinations.
First, they showed that Fragile X exists at the pre-synaptic, or sending side of the synapse, an area that had not been widely studied.
"For over 25 years the field has focused almost exclusively on the post-synaptic, receiving side. Almost no one has looked at the pre-synaptic side, as it was not thought to be involved in Fragile X," said Fallon.
This discovery is important because scientists, if they are to treat Fragile X syndrome, autism or mental retardation must know where the functional defect actually is. Fallon''s research helps fill in a potential gap.
"The implication is that pre-synaptic defects could contribute to the pathology in autism in Fragile X," said Fallon.
Also, researchers found that Fragile X protein is only present in a small fraction of what are known as pre-synaptic specializations.
The pre-synaptic Fragile X protein also turned out to be present in microscopic granules, which look like tiny pebbles under a high-powered microscope. Understanding the Fragile X granule is important in this context because the finding could lead to more targeted treatments.
The researchers hypothesize that the granules contain multiple RNAs, or sets of genetic information to help modify the synapse during learning and memory.
If their theory is proven correct, the granules might serve as pinpoint targets for eventual drug treatments of autism.
The study, titled "The FXG: A presynaptic Fragile X granule expressed in a subset of developing brain circuits," is published in the recent issue of the Journal of Neuroscience. (ANI)
I read this at this link
Led by Justin Fallon, professor of neuroscience at Brown, the study''s finding opens a new line of research about potential treatments for autism.
Autism is a neurological disorder that strikes young children and can impair development of social interaction and communication.
"If you are going to treat the disease you need to be able to target the defective elements. The Fragile X granule offers such a target," said Fallon.
Although, autism can be caused by a variety of genetic factors, Fallon''s lab focused on one particular area - the Fragile X protein.
If that protein is mutated, it leads to Fragile X syndrome, which causes mental retardation and is often accompanied by autism.
It is believed that autism and mental retardation are diseases of the synapse, the basic unit of information exchange and storage in the brain.
The researchers focused their study on the Fragile X protein and synaptic connections in healthy mice.
By examining specially prepared sections of mouse brain tissue with high-powered light and electron microscopes, researchers made a number of determinations.
First, they showed that Fragile X exists at the pre-synaptic, or sending side of the synapse, an area that had not been widely studied.
"For over 25 years the field has focused almost exclusively on the post-synaptic, receiving side. Almost no one has looked at the pre-synaptic side, as it was not thought to be involved in Fragile X," said Fallon.
This discovery is important because scientists, if they are to treat Fragile X syndrome, autism or mental retardation must know where the functional defect actually is. Fallon''s research helps fill in a potential gap.
"The implication is that pre-synaptic defects could contribute to the pathology in autism in Fragile X," said Fallon.
Also, researchers found that Fragile X protein is only present in a small fraction of what are known as pre-synaptic specializations.
The pre-synaptic Fragile X protein also turned out to be present in microscopic granules, which look like tiny pebbles under a high-powered microscope. Understanding the Fragile X granule is important in this context because the finding could lead to more targeted treatments.
The researchers hypothesize that the granules contain multiple RNAs, or sets of genetic information to help modify the synapse during learning and memory.
If their theory is proven correct, the granules might serve as pinpoint targets for eventual drug treatments of autism.
The study, titled "The FXG: A presynaptic Fragile X granule expressed in a subset of developing brain circuits," is published in the recent issue of the Journal of Neuroscience. (ANI)
I read this at this link
An Award?
My blogger friend Stefanie over at her I Brought You In Blog got an award. Stefanie also has another blog called Mom's Most Wanted which has all kinds of cool stuff to check out and giveaways. I think her award was for her Mom's Most Wanted site.
I think she in turn is giving me an award for making a difference in someone's life. It should be an award for the "new lame blogger who doesn't get what she is suppose to do now". So I in turned emailed Stefanie to get a better idea of what I am suppose to do. When I know more you will also but in the meantime check out Stefanie's blog and her Mom's Most Wanted blog.
Hope everyone has a Happy Friday!
I think she in turn is giving me an award for making a difference in someone's life. It should be an award for the "new lame blogger who doesn't get what she is suppose to do now". So I in turned emailed Stefanie to get a better idea of what I am suppose to do. When I know more you will also but in the meantime check out Stefanie's blog and her Mom's Most Wanted blog.
Hope everyone has a Happy Friday!
Thursday, February 19, 2009
Research for Timmy and other special kids
I have spent a ton of time researching different things for Timmy. Diet, ABA, HBOT, Meds, Camp, Schools, you name it I have googled it. I wish I had the time and money and patience to take everything I have pulled together and learned to write a book for people who are struggling in their fight for their children. The thing is I know there is so much more I have to still learn but I have so much I can share. I am thinking of starting another blog to just document each agency I find, each PDF of services of I have located, each directory of phone numbers and agencies, each special school and camp out there. I just think it would be so awesome to have everything in one place so instead of taking years to find things someone could go to the site and get a link to what they need or a hint of where to begin. I wonder if any of you in blog land would be interested in helping me with this?
Let me know, you know how to find me...
Let me know, you know how to find me...
Wednesday, February 18, 2009
Wednesday Word - Compassion
This word is something I strive to achieve on a daily basis. The following quotes touched me as I researched my word today:
Viktor Frankl:
We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.
Martin Luther King, Jr.:
I look forward confidently to the day when all who work for a living will be one with no thought to their separateness as Negroes, Jews, Italians or any other distinctions. This will be the day when we bring into full realization the American dream -- a dream yet unfulfilled. A dream of equality of opportunity, of privilege and property widely distributed; a dream of a land where men will not take necessities from the many to give luxuries to the few; a dream of a land where men will not argue that the color of a man's skin determines the content of his character; a dream of a nation where all our gifts and resources are held not for ourselves alone, but as instruments of service for the rest of humanity; the dream of a country where every man will respect the dignity and worth of the human personality.
Unknown:
It is lack of love for ourselves that inhibits our compassion toward others. If we make friends with ourselves, then there is no obstacle to opening our hearts and minds to others.
Viktor Frankl:
We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.
Martin Luther King, Jr.:
I look forward confidently to the day when all who work for a living will be one with no thought to their separateness as Negroes, Jews, Italians or any other distinctions. This will be the day when we bring into full realization the American dream -- a dream yet unfulfilled. A dream of equality of opportunity, of privilege and property widely distributed; a dream of a land where men will not take necessities from the many to give luxuries to the few; a dream of a land where men will not argue that the color of a man's skin determines the content of his character; a dream of a nation where all our gifts and resources are held not for ourselves alone, but as instruments of service for the rest of humanity; the dream of a country where every man will respect the dignity and worth of the human personality.
Unknown:
It is lack of love for ourselves that inhibits our compassion toward others. If we make friends with ourselves, then there is no obstacle to opening our hearts and minds to others.
Tuesday, February 17, 2009
Patience - Key Word for Today
I decided to think about keywords that can help in our daily lives and this is a big one for me. I need to be more patient. I found a site where I can put the keyword I am thinking about and get quotes from other people, below are some of them, today it's all about patience.
Patience Definition
He that can have patience can have what he will.
Benjamin Franklin
Patience is the companion of wisdom.
Saint Augustine
Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
Harriet Tubman
Have patience. All things are difficult before they become easy.
Saadi
Adopt the pace of nature: her secret is patience.
Ralph Waldo Emerson
Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace.
Victor Hugo
If patience is worth anything, it must endure to the end of time. And a living faith will last in the midst of the blackest storm.
Mohandas Gandhi
You must first have a lot of patience to learn to have patience.
Stanislaw Lec
The greatest power is often simple patience.
E. Joseph Cossman
How many a man has thrown up his hands at a time when a little more effort, a little more patience would have achieved success.
Elbert Hubbard
How can a society that exists on instant mashed potatoes, packaged cake mixes, frozen dinners, and instant cameras teach patience to its young?
Paul Sweeney
Everything is out there if you know how to find it, and have the patience. I don't and haven't, but that's my problem.
Tom Holt
For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice - no paper currency, no promises to pay, but the gold of real service.
John Burroughs
Patience is bitter, but its fruit is sweet.
Jean Jacques Rousseau
Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.
Carl Jung
I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.
Lao Tzu
Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.
Hal Borland
Patience, n. A minor form of dispair, disguised as a virtue.
Ambrose Bierce
Endurance is patience concentrated.
Thomas Carlyle
The marvel of all history is the patience with which men and women submit to burdens unnecessarily laid upon them by their governments.
George Washington
Patience is the best remedy for every trouble.
Titus Maccius Plautus
Who ever is out of patience is out of possession of their soul.
Francis Bacon
Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.
Joseph Addison
I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable.
Anne Morrow Lindbergh
To bear with patience wrongs done to oneself is a mark of perfection, but to bear with patience wrongs done to someone else is a mark of imperfection and even of actual sin.
Saint Thomas Aquinas
Genius is eternal patience.
Michelangelo
All men commend patience, although few are willing to practice it.
Thomas Kempis
The two most powerful warriors are patience and time.
Leo Tolstoy
The keys to patience are acceptance and faith. Accept things as they are, and look realistically at the world around you. Have faith in yourself and in the direction you have chosen.
Ralph Marston
It takes patience to appreciate domestic bliss; volatile spirits prefer unhappiness.
George Santayana
Endurance is nobler than strength, and patience than beauty.
John Ruskin
Patience, persistence and perspiration make an unbeatable combination for success.
Napoleon Hill
Our patience will achieve more than our force.
Edmund Burke
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.
Julius Caesar
I do not have much patience with a thing of beauty that must be explained to be understood. If it does need additional interpretation by someone other than the creator, then I question whether it has fulfilled its purpose.
Charlie Chaplin
Patience will achieve more than force.
Edmund Burke
Abused patience turns to fury.
Thomas Fuller
I believe there's too little patience and context to many of the investigations I read or see on television.
Bob Woodward
It is strange that the years teach us patience; that the shorter our time, the greater our capacity for waiting.
Elizabeth Taylor
Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace.
May Sarton
You have to find the peace and patience within yourself to be a model and an example to others and not judge.
Judith Light
The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.
Arnold H. Glasow
If you have confidence you have patience. Confidence, that is everything.
Ilie Nastase
Patience is the best medicine.
John Florio
Patience and tenacity are worth more than twice their weight of cleverness.
Thomas Huxley
Patience can't be acquired overnight. It is just like building up a muscle. Every day you need to work on it.
Eknath Easwaran
As anyone who has ever been around a cat for any length of time well knows, cats have enormous patience with the limitations of the human kind.
Cleveland Amory
As I pass it, I feel as if I saw a dear old mother, sweet in her weakness, trembling at the approach of her dissolution, but not appealing to me against the inevitable, rather endeavouring to reassure me by her patience, and pointing to a hopeful future.
Thomas Edward Brown
Humility is attentive patience.
Simone Weil
Patience and Diligence, like faith, remove mountains.
William Penn
Writing is good, thinking is better. Cleverness is good, patience is better.
Herman Hesse
There is no substitute for hard work, 23 or 24 hours a day. And there is no substitute for patience and acceptance.
Cesar Chavez
I grow plants for many reasons: to please my eye or to please my soul, to challenge the elements or to challenge my patience, for novelty or for nostalgia, but mostly for the joy in seeing them grow.
David Hobson
Good ideas are not adopted automatically. They must be driven into practice with courageous patience.
Hyman Rickover
My biggest weakness is patience, wanting to see things happen too quickly or get changes in place right away. Not having the patience to let things develop.
Paul Gleason
Have patience with all things, But, first of all with yourself.
Saint Francis de Sales
Patience Definition
He that can have patience can have what he will.
Benjamin Franklin
Patience is the companion of wisdom.
Saint Augustine
Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
Harriet Tubman
Have patience. All things are difficult before they become easy.
Saadi
Adopt the pace of nature: her secret is patience.
Ralph Waldo Emerson
Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace.
Victor Hugo
If patience is worth anything, it must endure to the end of time. And a living faith will last in the midst of the blackest storm.
Mohandas Gandhi
You must first have a lot of patience to learn to have patience.
Stanislaw Lec
The greatest power is often simple patience.
E. Joseph Cossman
How many a man has thrown up his hands at a time when a little more effort, a little more patience would have achieved success.
Elbert Hubbard
How can a society that exists on instant mashed potatoes, packaged cake mixes, frozen dinners, and instant cameras teach patience to its young?
Paul Sweeney
Everything is out there if you know how to find it, and have the patience. I don't and haven't, but that's my problem.
Tom Holt
For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice - no paper currency, no promises to pay, but the gold of real service.
John Burroughs
Patience is bitter, but its fruit is sweet.
Jean Jacques Rousseau
Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.
Carl Jung
I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.
Lao Tzu
Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.
Hal Borland
Patience, n. A minor form of dispair, disguised as a virtue.
Ambrose Bierce
Endurance is patience concentrated.
Thomas Carlyle
The marvel of all history is the patience with which men and women submit to burdens unnecessarily laid upon them by their governments.
George Washington
Patience is the best remedy for every trouble.
Titus Maccius Plautus
Who ever is out of patience is out of possession of their soul.
Francis Bacon
Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.
Joseph Addison
I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable.
Anne Morrow Lindbergh
To bear with patience wrongs done to oneself is a mark of perfection, but to bear with patience wrongs done to someone else is a mark of imperfection and even of actual sin.
Saint Thomas Aquinas
Genius is eternal patience.
Michelangelo
All men commend patience, although few are willing to practice it.
Thomas Kempis
The two most powerful warriors are patience and time.
Leo Tolstoy
The keys to patience are acceptance and faith. Accept things as they are, and look realistically at the world around you. Have faith in yourself and in the direction you have chosen.
Ralph Marston
It takes patience to appreciate domestic bliss; volatile spirits prefer unhappiness.
George Santayana
Endurance is nobler than strength, and patience than beauty.
John Ruskin
Patience, persistence and perspiration make an unbeatable combination for success.
Napoleon Hill
Our patience will achieve more than our force.
Edmund Burke
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.
Julius Caesar
I do not have much patience with a thing of beauty that must be explained to be understood. If it does need additional interpretation by someone other than the creator, then I question whether it has fulfilled its purpose.
Charlie Chaplin
Patience will achieve more than force.
Edmund Burke
Abused patience turns to fury.
Thomas Fuller
I believe there's too little patience and context to many of the investigations I read or see on television.
Bob Woodward
It is strange that the years teach us patience; that the shorter our time, the greater our capacity for waiting.
Elizabeth Taylor
Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace.
May Sarton
You have to find the peace and patience within yourself to be a model and an example to others and not judge.
Judith Light
The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.
Arnold H. Glasow
If you have confidence you have patience. Confidence, that is everything.
Ilie Nastase
Patience is the best medicine.
John Florio
Patience and tenacity are worth more than twice their weight of cleverness.
Thomas Huxley
Patience can't be acquired overnight. It is just like building up a muscle. Every day you need to work on it.
Eknath Easwaran
As anyone who has ever been around a cat for any length of time well knows, cats have enormous patience with the limitations of the human kind.
Cleveland Amory
As I pass it, I feel as if I saw a dear old mother, sweet in her weakness, trembling at the approach of her dissolution, but not appealing to me against the inevitable, rather endeavouring to reassure me by her patience, and pointing to a hopeful future.
Thomas Edward Brown
Humility is attentive patience.
Simone Weil
Patience and Diligence, like faith, remove mountains.
William Penn
Writing is good, thinking is better. Cleverness is good, patience is better.
Herman Hesse
There is no substitute for hard work, 23 or 24 hours a day. And there is no substitute for patience and acceptance.
Cesar Chavez
I grow plants for many reasons: to please my eye or to please my soul, to challenge the elements or to challenge my patience, for novelty or for nostalgia, but mostly for the joy in seeing them grow.
David Hobson
Good ideas are not adopted automatically. They must be driven into practice with courageous patience.
Hyman Rickover
My biggest weakness is patience, wanting to see things happen too quickly or get changes in place right away. Not having the patience to let things develop.
Paul Gleason
Have patience with all things, But, first of all with yourself.
Saint Francis de Sales
Sunday, February 15, 2009
Reconnecting - Off Topic Post
I found a person very dear to me I lost contact with almost 30 years ago yesterday on Facebook. She has this special place in my heart and always has. It was amazing to hear her voice, hear about her life, her children, her husband and her triumphs and struggles. I am so proud of the woman she has become. Her children are both in college and doing well. She is now happily married to a wonderful guy and her Mother is still the pain in ass she was when we were younger! She has had some tough medical things come up and she has dealt with them and is dealing with them the way I would expect her to, head on and strong. I wish she lived closer to me so I could give her a hug once in a while. I wish she was closer so she and Timmy could be close. She was like a daughter to me and held me up when I was falling.
It makes me realize that there were some really special people in my life journey so far. People who I lost touch with physically but will always be so special in my heart. With the internet and facebook, myspace, classmates, etc it's easier to reconnect and find these special people. Go out there and look for them, you can never have too many people in your life to love or to love you back. It's worth the effort to find them...
It makes me realize that there were some really special people in my life journey so far. People who I lost touch with physically but will always be so special in my heart. With the internet and facebook, myspace, classmates, etc it's easier to reconnect and find these special people. Go out there and look for them, you can never have too many people in your life to love or to love you back. It's worth the effort to find them...
Saturday, February 14, 2009
Friday, February 13, 2009
Bedtime tonight is the night
For the past 2 years I have been unsuccessful getting Timmy to sleep in his own room. I have tried bribery, I have tried cajoling, I have tried threatening, you name it I have tried it. We have spent the last 3 weeks talking to the therapist about Timmy sleeping in his own room. Tonight is the night he has promised he will do it. He is currently parking himself on a lounge chair in my bedroom, he isn't in my bed but still I would like to have my own room at night and be able to read a book or just lay quietly and be alone.
So tonight when I pick him up we will again discuss what we have been talking about seriously for 3 weeks. Last night he tried to get me to move it to Saturday night and I refused. I am sure it's going to be a tough night for both of us but there is a new Pokemon movie on at his bedtime tonight so I am hoping that helps. I am not giving in and it's may get a bit ugly but he needs to do this and I need some space.
So all my friendly bloggers say a prayer for us tonight, we need all the help we can get. Oh and BTW we still have no BA.....
So tonight when I pick him up we will again discuss what we have been talking about seriously for 3 weeks. Last night he tried to get me to move it to Saturday night and I refused. I am sure it's going to be a tough night for both of us but there is a new Pokemon movie on at his bedtime tonight so I am hoping that helps. I am not giving in and it's may get a bit ugly but he needs to do this and I need some space.
So all my friendly bloggers say a prayer for us tonight, we need all the help we can get. Oh and BTW we still have no BA.....
Wednesday, February 11, 2009
Happy Wednesday,, well not happy but Wednesday
Update: So I get a call from the new BA who barely speaks english, at this point I am so frustrated that I have called my CMO worker and requested she pre-screen this person before I have them enter our home and lives because I am so cynical with the process I may not be fair. More to come,,,,
So here's the good news, my sister's blog was feature on SITS today, way to go Sistah!
For me the saga continues to get a Behavioral Assistant for Timmy. Per the course we had a phone call and emails last week with the promise of a new BA. Well on Thursday at 9 pm after another 3 weeks without a BA this new person calls me. I find out he lives over 2 hours away and once he hears where we live he is not able to work with us. So back to square 0 again! On Friday after numerous calls to the CMO they tell me they will search for another BA for us. Monday nothing, Tuesday a.m. I get an email saying the following "Although we have not been able to find a BA for you yet because we are looking for one and anticipating finding one very soon we will not authorize any additional Therapist hours" GRRRRRRRRRRRRRRRRRRRRR. Well those that know me know that that email just infuriates me so I start calling and emailing. Then I get an email about an hour later stating they found a new agency and the referral has been sent, I will be getting a call in the afternoon from this new BA. So tick tock tick tock, not very patient Marcie is waiting for the call and guess what, surprise of all surprises, it doesn't come. Nothing, Nada, Nyet.
This morning I pick up the phone and call the office of the director of my local CMO, of course I can only speak with her Admin Assistant who assures me she will look into it. After 30 minutes, I get another email from the CMO, this time stating that they are sorry but the agency never got the referral but it's being resent and they have assigned a BA. So me being me writes back, well that's nice and I hope someone will make sure this person knows how to be a BA and is reviewing their credentials to make sure this one doesn't call my child a Brat and has actually worked with a child on the Autism Spectrum before. I am now at the point where I am not going to have people who don't know what they are doing come in and out of our lives and cause chaos. I have some expectations here and I am not willing to sacrifice my expectations for an hour break because guess what, the wrong person again could be the one who sends Timmy over the edge.
Well wish me luck, I will continue to make phone calls and raise havoc with these people today in between trying to make a living! Oh and by the way, I signed Timmy up for Summer Camp, I still don't have the funds for it in place but hopefully I will find a way to make it happen, not just for him but for me too!
So here's the good news, my sister's blog was feature on SITS today, way to go Sistah!
For me the saga continues to get a Behavioral Assistant for Timmy. Per the course we had a phone call and emails last week with the promise of a new BA. Well on Thursday at 9 pm after another 3 weeks without a BA this new person calls me. I find out he lives over 2 hours away and once he hears where we live he is not able to work with us. So back to square 0 again! On Friday after numerous calls to the CMO they tell me they will search for another BA for us. Monday nothing, Tuesday a.m. I get an email saying the following "Although we have not been able to find a BA for you yet because we are looking for one and anticipating finding one very soon we will not authorize any additional Therapist hours" GRRRRRRRRRRRRRRRRRRRRR. Well those that know me know that that email just infuriates me so I start calling and emailing. Then I get an email about an hour later stating they found a new agency and the referral has been sent, I will be getting a call in the afternoon from this new BA. So tick tock tick tock, not very patient Marcie is waiting for the call and guess what, surprise of all surprises, it doesn't come. Nothing, Nada, Nyet.
This morning I pick up the phone and call the office of the director of my local CMO, of course I can only speak with her Admin Assistant who assures me she will look into it. After 30 minutes, I get another email from the CMO, this time stating that they are sorry but the agency never got the referral but it's being resent and they have assigned a BA. So me being me writes back, well that's nice and I hope someone will make sure this person knows how to be a BA and is reviewing their credentials to make sure this one doesn't call my child a Brat and has actually worked with a child on the Autism Spectrum before. I am now at the point where I am not going to have people who don't know what they are doing come in and out of our lives and cause chaos. I have some expectations here and I am not willing to sacrifice my expectations for an hour break because guess what, the wrong person again could be the one who sends Timmy over the edge.
Well wish me luck, I will continue to make phone calls and raise havoc with these people today in between trying to make a living! Oh and by the way, I signed Timmy up for Summer Camp, I still don't have the funds for it in place but hopefully I will find a way to make it happen, not just for him but for me too!
Sunday, February 8, 2009
Finding the money for Summer Camp
I found a wonderful 7 week overnight summer camp program that would welcome Timmy. They offer ABA, education and socialization, these are all the things that Timmy needs. Now I just have to figure out how to come up with 8,000 by the end of April. It's so hard to do everything financially for him alone. His medications and doctors not to mention hospital co-pays, homeopathic doctors, special diet are all catching up with me now. I make a decent living but with his needs it's a paycheck to paycheck experience now. I have burned up the savings I had just to get him where we are now. There are some options, we could move to a smaller less expensive place but moving for him is traumatic and it would cost me 5,000 or more just to move us. I am going to see if I can get the school board to help pay for this since Timmy is suppose to be in year round school. If I could just get 1/2 of the money from another source I would live on PB&J for the next 6 months to come up with the other half. Anyone have any brilliant ideas?
Saturday, February 7, 2009
Opening the Gates - An amazing young man
Original Article found at the Jewish Journal
By Jacob Artson
Jacob Artson, 16, gave the following speech last May at a conference in Los Angeles titled "Opening the Gates: Building Inclusive Congregations and Communities for Jews with Special Needs," where he shared the keynote address with his father, Rabbi Bradley Artson, dean of the Ziegler School of Rabbinic Studies at American Jewish University. The conference was co-sponsored by The Jewish Federation, HaMercaz, The Board of Rabbis, the Bureau of Jewish Education and the Kalsman Institute on Judaism and Health.
Hi. My name is Jacob Artson and I am a person just like you.
I am part of a wonderful Jewish family, I go to our local public high school, where I am in mostly regular classes, I play sports, I love to travel, and I enjoy hanging out with my friends and girlfriend.
The only difference between you and me is that I have lots of labels attached to me, like nonverbal, severely autistic and developmentally disabled.
It is true that I have some challenges, but there are lots of myths and misconceptions about autism out there. Many purported experts claim that individuals with autism are not interested in socializing. This is totally ridiculous. I love people, but my movement disorder constantly interferes with my efforts to interact. I cannot start and stop and switch my thinking or emotions or actions at the right time. This can make being in a big group very lonely and that is the worst thing about autism. So next time you see someone like me at your synagogue or at your event, remember that they probably feel really lonely and you could be the person to make their day by smiling at them and letting them know that they exist.
Another myth is that the majority of kids with autism are mentally retarded. In fact, our bodies are totally disorganized but our cognitive skills are intact and our minds are hungry for knowledge.
Every person alive is encumbered by challenges and blessed with gifts. I used to think that my ratio of challenges to gifts was higher than most, but now I realize that my challenges are just more obvious. I have learned that there are actually many positive aspects of autism. For example, I get a VIP pass at Disneyland and I get to kiss all the beautiful counselors at camp and pretend I don't know any better. On a serious note, not being able to speak means that you spend lots of time listening.
In fact, much of what I know I've learned from listening to conversations that other people didn't think I could hear, or listening through the wall to what the teacher in the next classroom was saying. People often ask me how I became such a good writer. The answer is that my inability to speak gives me lots of time to contemplate and imagine and also forces me to hear everyone's perspective and think about it because I cannot interrupt or monopolize the conversation like people who have oral speech.
In the autism world we say that not being able to speak doesn't mean that you don't have anything to say. In my experience, the converse is also true —just because you can speak doesn't mean that you have anything worth saying.
Since this is a conference on including people with disabilities in the Jewish community, I want to share with you the ways in which autism has affected my participation in Jewish life. I have found great support in God, Torah, and the Jewish community. The greatest single day of my life was my bar mitzvah because everyone there accepted and celebrated me for exactly who I am. At the end of the service, everyone came up on the bima for Adon Olam. I will carry in my mind and heart forever the picture of everyone there smiling at me. I had wonderful experiences when I was in a Jewish preschool and later kindergarten, even though my teachers had never had a child with autism in their class. What made those experiences successful was the way the teachers modeled inclusion for the other kids. They treated me as a person made in God's image and not as different in any way. In kindergarten, I had amazing peers. They were mostly Persian and inclusiveness is engrained in their culture. They tried all year to get me to interact with them even though I was usually too excited to focus. I've also had wonderful buddies from The Friendship Circle, attended several Jewish camps, participated in a Jewish musical theater program called The Miracle Project, and prayed at Koleinu, a service at Temple Beth Am for kids with special needs.
But there have been obstacles as well. I have never attended religious school because I was bored in the special ed Hebrew school and the typical classes did not allow a place for me to engage either. When I was younger, I went to synagogue every Shabbat but the other kids ignored me. As a teenager, I have had some wonderful Jewish experiences at camp and elsewhere, but the first reaction is that I am too disabled to attend, or that I don't participate once I'm there. So whether I'm invited seems to depend on the particular director that year. I have noticed that when I attend Jewish youth group events, the volunteers seem to pay attention primarily to the verbal kids, so I am lonely. I suspect that this stems from lack of exposure, but their youth leaders could do a better job of modeling inclusion too.
The public schools and secular programs I have attended have been much more welcoming. The public schools are overwhelmingly black and Hispanic, and they, too, seem to have a culture of inclusion. The kids at school treat me like family and pull me into everything they do. I go to a secular camp for autistic kids in Aspen every summer and everyone is welcome there. We do cool things like go tubing and white water rafting and I am able to participate in everything because I know they will work with me where I'm at.
In my secular inclusive sports program, Team Prime Time, the director has taken the time to allow for sharing on several levels, so the kids all respect me for my intelligence and understand how hard I'm working to make a basket or kick the ball. I have also been part of their new volunteer training and have spoken about autism at school, but I have never been invited to participate in volunteer training for any Jewish program I have attended.
So here is a final thought I would like to leave you with:
The best peers and aides I have had didn't have any special background. It doesn't actually take any training to be a leader who models inclusion. It just takes an attitude that all people are made in God's image and it is our job to find the part of God hidden in each person.
I used to get very upset and offended at the idea of being someone's mitzvah project or community service project. But now I see that I also have a role to play in helping create the messianic future. It is easy in our affluent society to become too dazzled by the material opportunities and the privileges that we have been born with. But I have had to struggle from the day I was born to do many things that other people take for granted. Because of that, I have experienced God's love in a way most children have not. So maybe we are each other's mitzvah project because I can help them see the glories of the world that they have never noticed, and they can teach me how to look like other kids. All in all, who is getting a greater benefit? In the end, together we bring God's glory to all of humanity.
I can only say WOW! This is one amazing young man, share his story with those you love, with those you know and with those who don't understand our children.
Friday, February 6, 2009
Happy Friday, the lack of a BA saga continues,,
Happy Friday everyone.
Timmy and I have not been able to find a consistent, knowledgeable and stable Behavioral Assistant since his release from the hospital in November. It's been one calamity of errors after another and it is continuing to happen. It's been 3 weeks since our last flaky BA dropped out of the picture. She was a very nice woman but she couldn't seem to come to our home on a regular basis and put in the hours that we have been allocated. Basically in the 3 weeks she was with us instead of the 30 hours we should have gotten we got 8 hours and lots of no shows. So my CMO worker fired her over a week ago and said she would get us another one. Last night at 9 pm the phone rings and it's a BA but this gentleman lives 1-1/2 hours away and isn't able to commit to us, so we are back to square one with no BA. As all of you are aware my guy lives for consistency and although we have been promised the assistance we are not getting it. It sucks when someone is suppose to be coming over to work with him, he is expecting them and counts the hours and minutes until their arrival and they are a no-show. Guess who has to pick up the disappointment pieces being left behind? Yeap yours truly.
The CMO wanted and tried to push me to put him into residential care, when I refused they promised to provide us with certain in home services. You see the Mission Statement of the CMO in New Jersey is suppose to be keep the family together and the children at home yet here we are 3 months after the promises and the last discharge with very little of what was promised to us to make Timmy successful.
Today I am going to call my CMO worker again and her boss again. I am going to be calm, I am going to be calm and I am going to be calm. I will ask for what was promised to my boy in a kind way and not lose my temper or my patience. I will treat them with respect even though they are giving us none. Perhaps if I do this they will finally help me to help Timmy.
Timmy and I have not been able to find a consistent, knowledgeable and stable Behavioral Assistant since his release from the hospital in November. It's been one calamity of errors after another and it is continuing to happen. It's been 3 weeks since our last flaky BA dropped out of the picture. She was a very nice woman but she couldn't seem to come to our home on a regular basis and put in the hours that we have been allocated. Basically in the 3 weeks she was with us instead of the 30 hours we should have gotten we got 8 hours and lots of no shows. So my CMO worker fired her over a week ago and said she would get us another one. Last night at 9 pm the phone rings and it's a BA but this gentleman lives 1-1/2 hours away and isn't able to commit to us, so we are back to square one with no BA. As all of you are aware my guy lives for consistency and although we have been promised the assistance we are not getting it. It sucks when someone is suppose to be coming over to work with him, he is expecting them and counts the hours and minutes until their arrival and they are a no-show. Guess who has to pick up the disappointment pieces being left behind? Yeap yours truly.
The CMO wanted and tried to push me to put him into residential care, when I refused they promised to provide us with certain in home services. You see the Mission Statement of the CMO in New Jersey is suppose to be keep the family together and the children at home yet here we are 3 months after the promises and the last discharge with very little of what was promised to us to make Timmy successful.
Today I am going to call my CMO worker again and her boss again. I am going to be calm, I am going to be calm and I am going to be calm. I will ask for what was promised to my boy in a kind way and not lose my temper or my patience. I will treat them with respect even though they are giving us none. Perhaps if I do this they will finally help me to help Timmy.
Thursday, February 5, 2009
Monday, February 2, 2009
Following the blogs,,
This is totally off subject but then again maybe it isn't. I totally am immersed in the world of blogging right now. I find it amazing how many talented, funny and real people there are in the blogger world sharing their stories with us. I started this blog as a vent for my Fight for Timmy, I feel like I drive those around me crazy repeating the same stories over and over and non stop bitching to try and get the help and services we need so someday Timmy can be all he can be. That may be the clerk at the 7-11 down the street but that's ok. I just want him to be happy and successful in whatever path he chooses well except for being a criminal! Any back to the bloggers out there.
I want you all to know that you give me something to smile about on those days when I want to give up, you give me something to laugh about on those days when the world seems to be crashing around us but most of all you make you remember how lucky I am because as big as all of my problems seem to me they are really minuscule compared to what some of you are going through. So brother and sister bloggers out there, thank you for being my inspiration and support system!
I want you all to know that you give me something to smile about on those days when I want to give up, you give me something to laugh about on those days when the world seems to be crashing around us but most of all you make you remember how lucky I am because as big as all of my problems seem to me they are really minuscule compared to what some of you are going through. So brother and sister bloggers out there, thank you for being my inspiration and support system!
Friday, January 30, 2009
Sometimes,,,
I feel crappy because I want Timmy to give me a real hug
I feel crappy because I want Timmy to be happy and he isn't very much
I feel crappy because I need space and don't get it
I feel crappy because I am just tired of fighting
I feel crappy because his parents aren't around and I am left to pick up the pieces
I feel crappy because I want to be selfish and do things for myself and can't
I feel crappy because Timmy doesn't have many friends
I feel crappy because I have already raised my children and now at 50 (almost 51) I am doing it again, alone and with a special child and I don't want to be doing it( I read this back to myself and it sounds horrible, it's not that I don't love him with all I have, it's just I don't know if I can give him everything he needs and it sucks)
I feel really angry that the school district is putting him in the most restrictive environment and not looking at where he is today
I feel happy because Timmy is giggling and smiling
I feel happy because Timmy is actually in a mainstream afterschool program and doing well for the 1st time in 3 years around other "normal" children
I feel happy because I can read a book for an hour without 60 interruptions (yes it's at 10pm but I'll take it)
I feel happy because we finally got a therapist who is there and consistent
I feel happy because Timmy looks me in the eye now
I feel happy because we have a diagnosis that makes sense where before it didn't
I feel happy because of all the comments and feedback and realize how blessed and lucky we are
I feel happy because I have a job and an income to support us
I feel happy because I am alive
Thursday, January 29, 2009
I want some Privacy,,,,
Why oh why can't my boy give me any privacy? He is 7-1/2 now and still is stuck to me like glue. He follows me from room to room to room. He bangs on the bathroom door and says "I just have to ask you something". He refuses to sleep in his own room at night and goes into total meltdown mode for hours when I try to get him to, instead he sleeps on a chaise lounge in my room. He will not even go to the room to bed unless I am in there with him. I have bribed this child with everything in the book to get him to sleep in his room. He hasn't even had the tooth fairy come because she won't come if he isn't in his bed. Now if he spends the night at my sister's house he sleeps in the guest room no problem. Why is it that he is so attached to me when I am there? He will go places with other people, he leaves me without a care in the world but when he and I are together he is all over me like a fly on sh*t. I feel like such a complainer but I really need some space. I would love him to just sleep in his room so I have some time to myself in the evenings. Is that asking for too much? Am I expecting too much from him? Some days raising this little boy I love so much is just overwhelming!
Maybe just maybe if we could get a consistent, stable Behavioral Assistant this would happen. I am not looking for miracles, just a little space to breathe in and regroup at home!
Maybe just maybe if we could get a consistent, stable Behavioral Assistant this would happen. I am not looking for miracles, just a little space to breathe in and regroup at home!
The 25 facts about me since I was tagged post...
Thanks to my sister I have to think of 25 personal facts I want to share,,, ok here goes,,,
1. My sister and brother went gray way before me and now it's finally my turn to visit the hair dye guy at least every couple of months since it's not too bad yet but I still hate it!
2. I really like being an IT Project Manager most days and feel lucky that I am doing something I like and get paid for it.
3. I love to go to all-inclusives in the Caribbean or Mexico and just pamper myself.
4. I am a terrible document writer
5. I wish I would have gone to college and not learned everything via the school of life and hard knocks.
6. I want to buy a house but I don't know where I really want to live.
7. I spend way too much time alone with Timmy!
8. I am single and intend to stay single, I have no energy to have to take care of anyone else!
9. If I call you my friend you are my friend for life well unless you screw me over!
10. I am a carb junkie and could live on bread and pasta!
11. I don't like Sushi very much, it's a texture thing.
12. I want to go buy new living room furniture but the thought of dragging Timmy through furniture stores while I look terrifies me.
13. I am a pushover for those I love.
14. I am extremely mechanical and love building legos.
15. I really love new toys, flat screen TV's, video games, etc
16. I wish I could have had more time with my parents. You don't know what you have until it's gone
17. I have been the family gypsy and it's hard for me to stay in one place for too long.
18. I really want to take a trip across Europe
19. I am glad Obama is the President, let's hope he doesn't let us down.
20. I wish I could win the lottery and get Timmy all the help he needs, I never feel like I am doing enough to help him cope with his disability.
21. I can be brutally honest and have spent years learning how to curb my tongue and be a little more kind and patient with people.
22. I keep a lot inside of me and don't really share it with anyone because to me it would mean a crack in the independence armor.
23. I have a strawberry mark and have horrible memories of going to the doctor and it being burned off when I was little.
24. I am enjoying blogging, it's a cheap therapist!
25. I wish everyone would get along (middle child syndrome)and if you don't like someone just stay away from them because not everyone likes you or me for that matter and it's ok!
I guess it's time for me to tag someone so I am going to tag someone whose blog I ran across the other day, it's called Dear Noah
1. My sister and brother went gray way before me and now it's finally my turn to visit the hair dye guy at least every couple of months since it's not too bad yet but I still hate it!
2. I really like being an IT Project Manager most days and feel lucky that I am doing something I like and get paid for it.
3. I love to go to all-inclusives in the Caribbean or Mexico and just pamper myself.
4. I am a terrible document writer
5. I wish I would have gone to college and not learned everything via the school of life and hard knocks.
6. I want to buy a house but I don't know where I really want to live.
7. I spend way too much time alone with Timmy!
8. I am single and intend to stay single, I have no energy to have to take care of anyone else!
9. If I call you my friend you are my friend for life well unless you screw me over!
10. I am a carb junkie and could live on bread and pasta!
11. I don't like Sushi very much, it's a texture thing.
12. I want to go buy new living room furniture but the thought of dragging Timmy through furniture stores while I look terrifies me.
13. I am a pushover for those I love.
14. I am extremely mechanical and love building legos.
15. I really love new toys, flat screen TV's, video games, etc
16. I wish I could have had more time with my parents. You don't know what you have until it's gone
17. I have been the family gypsy and it's hard for me to stay in one place for too long.
18. I really want to take a trip across Europe
19. I am glad Obama is the President, let's hope he doesn't let us down.
20. I wish I could win the lottery and get Timmy all the help he needs, I never feel like I am doing enough to help him cope with his disability.
21. I can be brutally honest and have spent years learning how to curb my tongue and be a little more kind and patient with people.
22. I keep a lot inside of me and don't really share it with anyone because to me it would mean a crack in the independence armor.
23. I have a strawberry mark and have horrible memories of going to the doctor and it being burned off when I was little.
24. I am enjoying blogging, it's a cheap therapist!
25. I wish everyone would get along (middle child syndrome)and if you don't like someone just stay away from them because not everyone likes you or me for that matter and it's ok!
I guess it's time for me to tag someone so I am going to tag someone whose blog I ran across the other day, it's called Dear Noah
Wednesday, January 28, 2009
My sister tagged me
So my little (younger and thinner) sister tagged me so I am tagging her back! Her name is Debie and she is my favorite sister, yes she is my only sister but she is still my favorite sister! Deb has this organizational way about her that I envy. She is so freaking organized about everything she does, her blog will show you that. Me on the other hand well I am an unorganized mess at home and no matter how hard I try to get organized it doesn't work. The really weird part of all of this is that I am a Project Manager at work and will spend all day organizing and orchestrating a project to perfection but I get home and just have no clue where to begin. Hmmmm, maybe I should pay myself for each thing I organize at home and I would get motivated to do it, Nahhhhhhhhhh.
So here is the link to my sweet little sister's blog
http://devonshiredesignltd.blogspot.com
I hope you enjoy her as much as I do!
So here is the link to my sweet little sister's blog
http://devonshiredesignltd.blogspot.com
I hope you enjoy her as much as I do!
WOOHOO, Daycare Opened up this morning
So today was a school snow day and as you saw in my previous post I was looking for 144 different things to do with Timmy today but then I lucked out, daycare opened, yes they opened late but I was able to take him there to have fun and play with the other children and go to work. I mean really how bad am I, I wanted to go to work? Haha. Well I only have so many PTO days and with all the IEP meetings, therapist meetings, psych meetings, and on and on I would really like to save up my PTO so I can take a real vacation instead of a day here and a day there. So he is happy because he gets to have fun today with the other children and I am happy because I get to work and not take PTO time.
Now that's it's cold and rainy and snowing and all around yucky outside I am going to start looking for that perfect vacation for us this year. I would love to take him on a Disney Cruise but they cost twice as much as other cruise lines. Has anyone been on a Disney Cruise, what makes them so much better than a Royal Caribbean Cruise that I would pay double?
Now that's it's cold and rainy and snowing and all around yucky outside I am going to start looking for that perfect vacation for us this year. I would love to take him on a Disney Cruise but they cost twice as much as other cruise lines. Has anyone been on a Disney Cruise, what makes them so much better than a Royal Caribbean Cruise that I would pay double?
Tuesday, January 27, 2009
Maybe snow?? We need 144 ideas to stay busy tomorrow!
It's suppose to really really snow here and I am sure if there is an inch on the ground in the morning school will be cancelled. To me this means taking another PTO day to stay home stuck in the house with Timmy. Anyone have any good ideas how to occupy him for 12 hours? He is not only PDD-NOS but is also ADHD, this means he jumps from 1 thing to another thing every 5 minutes. So any brilliant ideas will bore him after 5 minutes this means I need tons and tons of ideas for 12 hours... how many things do we need to do, let's do the math, 720 minutes divided by 5 equals 144 ideas needed. Your help would be greatly appreciated. As a matter of fact if you want to come over and participate with us in any of the 144 ideas let me know :)
Ok, I guess I should think of some kind of cool giveaway for the person who has the best of the 144 ideas needed, so I will also take ideas for a giveaway, now let's keep it reasonable folks, something around $25.00 in value??
Ok, I guess I should think of some kind of cool giveaway for the person who has the best of the 144 ideas needed, so I will also take ideas for a giveaway, now let's keep it reasonable folks, something around $25.00 in value??
Wednesday, January 21, 2009
UC Davis Study Authors: Autism is Environmental - Can We Move On Now?
These days I don't know what to believe or where Timmy's PDD came from but I do know that I will keep looking for answers to help him and keep hoping some day he will recover. I read this and thought it was important to share.
David Kirby on The Huffington Post
I have always said there may be a small percentage of people with autism spectrum disorder (perhaps those with Asperger Syndrome) whose symptoms are a result only of their genetic makeup, with no environmental factors involved at all.
But a new study out of UC Davis' MIND Institute says that it's time to abandon science's long, expensive, and not very fruitful quest to find the gene or genes that cause autism alone, without any environmental triggers.
"We need to keep (environmental) studies going," Irva Hertz-Picciotto, the co-author of the study and professor of environmental and occupational health and epidemiology at UC Davis, said in a statement.
"We're looking at the possible effects of metals, pesticides and infectious agents on neurodevelopment," Hertz-Picciotto said. "If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible."
Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It's due to better diagnosing and counting.
The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Dr. Hertz-Piccotto said.
The study results suggest that "research should shift from genetics, to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California's children," the statement added.
The UC Davis Study, funded in part by the National Institute of Environmental Health Sciences (NIEHS) found that the rate of autism among six-year-olds in California mushroomed from less than 9 per 10,000 among the 1990 birth cohort, to more than 44 per 10,000 for kids born in 2000.
This increase, "cannot be explained by either changes in how the condition is diagnosed or counted," the statement said, "and the trend shows no sign of abating."
(It is important to keep in mind that almost every child born in 2000 would have received many vaccines that contained the mercury preservative thimerosal, which was not completely phased out of most - but not all - childhood vaccines until at least 2003.)
Of the 600-to-700 percent increase in autism reported in California between 1990 and 2000, fewer than 10 percent were due to the inclusion of milder cases, the study found, while only 24 percent could be attributed to earlier age at diagnosis.
There was only one logical conclusion: some thing or things in the environment had to be at play here.
I have always said that all environmental factors should be considered in at least some subgroups of autism. This position has been met with considerable ridicule. I believe that opponents are afraid that, if we start looking at toxins like heavy metals, it might one day lead back to thimerosal. Likewise, if we consider live virus triggers, we may have to take another look at the measles-mumps-rubella vaccine (which thousands of parents swear was the trigger than sent their children tumbling into autism).
Now, it's always been easier and more reassuring to tell ourselves that autism was almost purely genetic, that it was always with us at the rate of 1 in 90 men (1 in 60 in New Jersey) and that, gee, weren't doctors doing a great job these days of recognizing and diagnosis this disorder.
This pathetic groupthink has helped create hugely lopsided funding priorities in autism, where genetic studies get lavishly funded, while environmental ones are lucky to even pick up the dollar scraps left behind
"Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones," Hertz-Picciotto said. "We need to even out the funding."
I agree.
Yes, we must continue to look for the susceptibility genes that make some kids more vulnerable to environmental triggers - possibly through a diminished capacity to detoxify themselves.
But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.
It is illogical for us to oppose the study of, say, mercury exposures and autism, because it might somehow implicate thimerosal, and by extension, vaccines.
After all, heavy metal studies into autism could very well incriminate background environmental sources, but exonerate metal sources found in vaccines, such as mercury and aluminum.
And that would be a good thing for everyone.
David Kirby on The Huffington Post
I have always said there may be a small percentage of people with autism spectrum disorder (perhaps those with Asperger Syndrome) whose symptoms are a result only of their genetic makeup, with no environmental factors involved at all.
But a new study out of UC Davis' MIND Institute says that it's time to abandon science's long, expensive, and not very fruitful quest to find the gene or genes that cause autism alone, without any environmental triggers.
"We need to keep (environmental) studies going," Irva Hertz-Picciotto, the co-author of the study and professor of environmental and occupational health and epidemiology at UC Davis, said in a statement.
"We're looking at the possible effects of metals, pesticides and infectious agents on neurodevelopment," Hertz-Picciotto said. "If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible."
Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It's due to better diagnosing and counting.
The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Dr. Hertz-Piccotto said.
The study results suggest that "research should shift from genetics, to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California's children," the statement added.
The UC Davis Study, funded in part by the National Institute of Environmental Health Sciences (NIEHS) found that the rate of autism among six-year-olds in California mushroomed from less than 9 per 10,000 among the 1990 birth cohort, to more than 44 per 10,000 for kids born in 2000.
This increase, "cannot be explained by either changes in how the condition is diagnosed or counted," the statement said, "and the trend shows no sign of abating."
(It is important to keep in mind that almost every child born in 2000 would have received many vaccines that contained the mercury preservative thimerosal, which was not completely phased out of most - but not all - childhood vaccines until at least 2003.)
Of the 600-to-700 percent increase in autism reported in California between 1990 and 2000, fewer than 10 percent were due to the inclusion of milder cases, the study found, while only 24 percent could be attributed to earlier age at diagnosis.
There was only one logical conclusion: some thing or things in the environment had to be at play here.
I have always said that all environmental factors should be considered in at least some subgroups of autism. This position has been met with considerable ridicule. I believe that opponents are afraid that, if we start looking at toxins like heavy metals, it might one day lead back to thimerosal. Likewise, if we consider live virus triggers, we may have to take another look at the measles-mumps-rubella vaccine (which thousands of parents swear was the trigger than sent their children tumbling into autism).
Now, it's always been easier and more reassuring to tell ourselves that autism was almost purely genetic, that it was always with us at the rate of 1 in 90 men (1 in 60 in New Jersey) and that, gee, weren't doctors doing a great job these days of recognizing and diagnosis this disorder.
This pathetic groupthink has helped create hugely lopsided funding priorities in autism, where genetic studies get lavishly funded, while environmental ones are lucky to even pick up the dollar scraps left behind
"Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones," Hertz-Picciotto said. "We need to even out the funding."
I agree.
Yes, we must continue to look for the susceptibility genes that make some kids more vulnerable to environmental triggers - possibly through a diminished capacity to detoxify themselves.
But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.
It is illogical for us to oppose the study of, say, mercury exposures and autism, because it might somehow implicate thimerosal, and by extension, vaccines.
After all, heavy metal studies into autism could very well incriminate background environmental sources, but exonerate metal sources found in vaccines, such as mercury and aluminum.
And that would be a good thing for everyone.
Monday, January 19, 2009
Happy MLK Day!
I have been lagging on the blogging. I think it's the after Holidays thing or maybe it's the lack of services for Timmy and no time to do anything for me. So I thought I would write a quick update on what's happening or better yet barely happening...
1. New Therapist has been introduced, she came Saturday for 1-1/2, seems nice but can't see us again until next Sunday
2. New BA came last Saturday(9 days ago) and made it back today to help with Timmy since I am working. She was suppose to come Saturday afternoon but didn't show or call. Showed up today an hour late, my sister was ready to kill me (not really) but I feel awful since she did me a huge favor taking him for the morning and she has a life and things to do for herself, so I am so sorry Deb!
3. I have no clue when we will get respite Saturday again, they keep cancelling which means I am not getting anything done because when I am home my needy shadow is with me.
4. I am working on doing the CF diet for Timmy, it's harder than it seems but I will keep starting over till we get it right! GF is on the horizon
5. I called a D.A.N. practitioner in the area and found out how expensive it is to even see them, I have no clue where I am going to come up with that money
6. I need my hair dyed really bad but when I cave in and do it from home it always looks horrible!
7. We got to spend a day with Timmy's sister Emily which was wonderful and we miss her all the time and wish we lived closer to her.
8. Timmy lost his 2 front teeth but the tooth fairy is not coming until he sleeps in his own room, he sleeps in my room on a lounger but he is rapidly outgrowing it. Let's see if he moves to the floor or his room (right next to mine)when he starts falling off this thing.
9. IEP was postponed until next Monday and the school I really want him to go to does not have a classroom available for his age group.
10. I would love to do a "service" thing today but I am just barely making it providing for Timmy so that sucks!
Ok, that kind of is a quick synopsis of the last few weeks, keep us in your happy thoughts...
1. New Therapist has been introduced, she came Saturday for 1-1/2, seems nice but can't see us again until next Sunday
2. New BA came last Saturday(9 days ago) and made it back today to help with Timmy since I am working. She was suppose to come Saturday afternoon but didn't show or call. Showed up today an hour late, my sister was ready to kill me (not really) but I feel awful since she did me a huge favor taking him for the morning and she has a life and things to do for herself, so I am so sorry Deb!
3. I have no clue when we will get respite Saturday again, they keep cancelling which means I am not getting anything done because when I am home my needy shadow is with me.
4. I am working on doing the CF diet for Timmy, it's harder than it seems but I will keep starting over till we get it right! GF is on the horizon
5. I called a D.A.N. practitioner in the area and found out how expensive it is to even see them, I have no clue where I am going to come up with that money
6. I need my hair dyed really bad but when I cave in and do it from home it always looks horrible!
7. We got to spend a day with Timmy's sister Emily which was wonderful and we miss her all the time and wish we lived closer to her.
8. Timmy lost his 2 front teeth but the tooth fairy is not coming until he sleeps in his own room, he sleeps in my room on a lounger but he is rapidly outgrowing it. Let's see if he moves to the floor or his room (right next to mine)when he starts falling off this thing.
9. IEP was postponed until next Monday and the school I really want him to go to does not have a classroom available for his age group.
10. I would love to do a "service" thing today but I am just barely making it providing for Timmy so that sucks!
Ok, that kind of is a quick synopsis of the last few weeks, keep us in your happy thoughts...
Sunday, January 4, 2009
Losing my WIDGETS!
I am totally losing my widgets! I had all of these wonderful blogs linked to mine and I have lost them for the 900th time!! Shoot me now, back to searching for them all again. HELLLLLLLLLLLLLLLLLLP!!!!
GFCF Diet
I have been doing research when possible and I am looking into the GFCF Diet for Timmy. Since I am so busy with life in general and not sure what I am getting into I found this site Gluten Free Meals which will deliver meals for us to try. I am going to order a package from them and see how he does after a week of this. I will need to supplement it with lunch for school etc but after everything I have read this is worth a try. I am in information overload so I am going to try and take it one step at a time!
Everyone is touting the GFCF diet for Autism but nothing specifically for PDD-NOS but since we are on the spectrum it's worth a try!
As I go through this journey I will try and document what I am going to try and what seems to be helping, if anything!
Thursday, January 1, 2009
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