Thursday, December 30, 2010
If you have a child that disrobes...
Check out www.ikidsfashion.com for the Wonder Jumper for kids in sizes 2T-Youth6. This company was started by a family with a little boy who has an ASD, and they solved the problem of disrobing for him and now share their solution with other families.
Tuesday, November 16, 2010
Air Travel Rehearsal
Anyone who has traveled by air with a family member who has a developmental disability or ASD knows how traumatic it can be. This story really demonstrates some sensitivity to that problem and a growing desire to make it easier on us all.
Read here for the whole story which appeared on 11/16/10 in the Philadelphia Enquirer!
Children with autism practice traveling on 'mock' flights
By Linda Loyd
Inquirer Staff Writer
At 8 p.m. Saturday, Southwest Airlines Flight 2149 was poised to push back from the gate. Flight attendants gave fasten-seat-belt instructions, and First Officer Peter Hayes announced, "There's 25 minutes of flight time until we touch down in Philadelphia."
Capt. Todd Siems said the Boeing airliner was cruising at 37,000 feet. And after he turned off the seat-belt sign, the young passengers were served complimentary Sprite, cranberry-apple juice, and airplane-shaped crackers.
Flight 2149 never left the gate at Philadelphia International Airport, though. It was no ordinary flight, but rather a practice for children with autism and their families to become familiar with travel at the airport - bags, getting boarding passes, going through security, waiting at the gate, and sitting on the plane to experience the lights and sounds.
"I'm going to China, but we won't really," said an imaginative Gena Catanese, 5, of North Wales, accompanied by her parents and her sisters, Isabella, 6, and Emma, 3.
Just 18 months ago, Gena had a traumatic travel experience on vacation in Orlando, Fla. She expected to preboard the plane with her family, but the protocol was she could preboard only with one parent.
Gena became agitated and "overstimulated," said her mother, Melanie Catanese. "There was no way she was able to fly home that day."
After receiving a frantic call, Gena's pediatrician, Wendy Ross, at Albert Einstein Medical Center, phoned and faxed letters to the Orlando airport.
"I thought, 'This can never happen to one of my families again,' " said Ross, who sees children with learning disabilities, mental retardation, autism, and attention-deficit disorder. "Gena was saying she would never fly again. It was heartbreaking."
So Ross contacted Philadelphia airport and Rick Dempsey, head of the airport's Americans With Disabilities Act review committee.
"She wanted to bring a simulated airport experience for children with autism and their families," Dempsey said. "The committee thought it was a great idea. The [Transportation Security Administration] bought into it. We even got an airline, Southwest, to buy into the idea."
Since then, there have been three "mock" flights.
"We asked the crews if they would mind sticking around for 30 to 40 minutes and go through a mock turnaround on a flight, as if we were flying somewhere," said John Minor, Southwest's station manager here.
"We let them know that autistic children are very literal, so we don't want to say, 'We're flying to Disneyland,' " Minor said. "We just say, 'This is a test run.' "
Frontier Airlines plans a simulated flight for autistic children Dec. 11; US Airways Group has one planned for January. British Airways also has expressed interest.
In the spring, Ross trained 130 airport and airline employees on autism, which is diagnosed in one in 100 children annually.
"It's not something you outgrow, but if you get really good therapy, you can cope better, compensate better," Ross said. "My concern is that so many families do not go out into the community. It's unrealistic to think that these kids are going to be employable one day if they are not comfortable being in community venues as they grow up."
Ross went to Einstein four years ago from Children's Hospital in Boston and teamed up with psychologists, a speech and language pathologist, and occupational therapist Roger Ideishi from University of the Sciences to start programs for autistic children at the Please Touch Museum, Garden State Discovery Museum, Adventure Aquarium, and the Academy of Natural Sciences.
"Currently, we are consulting with the Smithsonian," she said.
Autistic children have difficulty with communication and socialization, and oversensitivity to sensory information and transition, Ross said. "New or unexpected things that have lights, sounds, movement can make them more likely to get upset or have a tantrum."
Her goal is to expand Philadelphia's program to airports nationwide, "everything from curb to cabin and back."
Sabra Townsend, whose son Brandon, 13, is autistic and was on the latest pretend flight, is part of a volunteer-run community-support group (Autism, Sharing & Parenting) that meets monthly at, alternately, the Center for Autism on Ford Road in Philadelphia and Community Behavioral Health, at Eighth and Market.
Townsend is helping Ross compile a list of families interested in practice flights. For information, call Einstein's department of developmental pediatrics at 215-456-6083.
After Saturday's training, Sheila and Derek Green of East Mount Airy said their son, Julian, 9, was ready to fly to Walt Disney World.
"He'll completely get it the next time he gets on an airplane," Sheila Green said. "We're going to Disney World as soon as possible!"
Read more: http://www.philly.com/inquirer/business/20101116_Children_with_autism_practice_traveling_on__mock__flights.html?viewAll=y#ixzz15TiA781b
Watch sports videos you won't find anywhere else;
Read here for the whole story which appeared on 11/16/10 in the Philadelphia Enquirer!
Children with autism practice traveling on 'mock' flights
By Linda Loyd
Inquirer Staff Writer
At 8 p.m. Saturday, Southwest Airlines Flight 2149 was poised to push back from the gate. Flight attendants gave fasten-seat-belt instructions, and First Officer Peter Hayes announced, "There's 25 minutes of flight time until we touch down in Philadelphia."
Capt. Todd Siems said the Boeing airliner was cruising at 37,000 feet. And after he turned off the seat-belt sign, the young passengers were served complimentary Sprite, cranberry-apple juice, and airplane-shaped crackers.
Flight 2149 never left the gate at Philadelphia International Airport, though. It was no ordinary flight, but rather a practice for children with autism and their families to become familiar with travel at the airport - bags, getting boarding passes, going through security, waiting at the gate, and sitting on the plane to experience the lights and sounds.
"I'm going to China, but we won't really," said an imaginative Gena Catanese, 5, of North Wales, accompanied by her parents and her sisters, Isabella, 6, and Emma, 3.
Just 18 months ago, Gena had a traumatic travel experience on vacation in Orlando, Fla. She expected to preboard the plane with her family, but the protocol was she could preboard only with one parent.
Gena became agitated and "overstimulated," said her mother, Melanie Catanese. "There was no way she was able to fly home that day."
After receiving a frantic call, Gena's pediatrician, Wendy Ross, at Albert Einstein Medical Center, phoned and faxed letters to the Orlando airport.
"I thought, 'This can never happen to one of my families again,' " said Ross, who sees children with learning disabilities, mental retardation, autism, and attention-deficit disorder. "Gena was saying she would never fly again. It was heartbreaking."
So Ross contacted Philadelphia airport and Rick Dempsey, head of the airport's Americans With Disabilities Act review committee.
"She wanted to bring a simulated airport experience for children with autism and their families," Dempsey said. "The committee thought it was a great idea. The [Transportation Security Administration] bought into it. We even got an airline, Southwest, to buy into the idea."
Since then, there have been three "mock" flights.
"We asked the crews if they would mind sticking around for 30 to 40 minutes and go through a mock turnaround on a flight, as if we were flying somewhere," said John Minor, Southwest's station manager here.
"We let them know that autistic children are very literal, so we don't want to say, 'We're flying to Disneyland,' " Minor said. "We just say, 'This is a test run.' "
Frontier Airlines plans a simulated flight for autistic children Dec. 11; US Airways Group has one planned for January. British Airways also has expressed interest.
In the spring, Ross trained 130 airport and airline employees on autism, which is diagnosed in one in 100 children annually.
"It's not something you outgrow, but if you get really good therapy, you can cope better, compensate better," Ross said. "My concern is that so many families do not go out into the community. It's unrealistic to think that these kids are going to be employable one day if they are not comfortable being in community venues as they grow up."
Ross went to Einstein four years ago from Children's Hospital in Boston and teamed up with psychologists, a speech and language pathologist, and occupational therapist Roger Ideishi from University of the Sciences to start programs for autistic children at the Please Touch Museum, Garden State Discovery Museum, Adventure Aquarium, and the Academy of Natural Sciences.
"Currently, we are consulting with the Smithsonian," she said.
Autistic children have difficulty with communication and socialization, and oversensitivity to sensory information and transition, Ross said. "New or unexpected things that have lights, sounds, movement can make them more likely to get upset or have a tantrum."
Her goal is to expand Philadelphia's program to airports nationwide, "everything from curb to cabin and back."
Sabra Townsend, whose son Brandon, 13, is autistic and was on the latest pretend flight, is part of a volunteer-run community-support group (Autism, Sharing & Parenting) that meets monthly at, alternately, the Center for Autism on Ford Road in Philadelphia and Community Behavioral Health, at Eighth and Market.
Townsend is helping Ross compile a list of families interested in practice flights. For information, call Einstein's department of developmental pediatrics at 215-456-6083.
After Saturday's training, Sheila and Derek Green of East Mount Airy said their son, Julian, 9, was ready to fly to Walt Disney World.
"He'll completely get it the next time he gets on an airplane," Sheila Green said. "We're going to Disney World as soon as possible!"
Read more: http://www.philly.com/inquirer/business/20101116_Children_with_autism_practice_traveling_on__mock__flights.html?viewAll=y#ixzz15TiA781b
Watch sports videos you won't find anywhere else;
More Confirmation that Hope is Justified
I have copied and pasted this article that came to me today through my Google Alerts about research studies on ASD's. It brought tears to my eyes to read about such encouraging progress toward the possibility of real, permanent improvement for those affected by ASD's.
Researchers Use Skin Cells to Study Autism in Petri Dish
November 15, 2010 at 4:00 AM by Gant Team · Leave a Comment
By Barbara Kennedy, Penn State
A team of researchers has used stem cells taken from the skin of patients with Rett syndrome — the most physically disabling of the autism disorders — to replicate autism in the lab and to study how the disease affects brain cells. The team’s findings, to be published on Nov. 12 in the journal Cell, reveal disease-specific cellular defects, such as fewer functional connections between particular neurons, and demonstrate these defects are reversible. The results raise the hope that, one day, autism may become a treatable condition.
“The beauty and excitement of this new work is the demonstration that we can use patients’ skin to study autism,” said Gong Chen, associate professor of biology at Penn State and one of the study’s authors. Before this research, scientists had been limited to studying the brains of people with autistic-spectrum disorders via imaging technologies or with postmortem brain tissues. “The fully-functional neurons derived from skin are no different in their electrophysiology properties from neurons isolated from the brain. I believe this study, together with other recent studies, will provide hope for patient-specific stem-cell therapy in treating some diseases that currently are difficult to cure.”
Rett syndrome primarily affects girls, and the symptoms often become apparent just after they have learned to walk and say a few words. Affected children regress into an infant-like state, losing speech and motor skills, and developing stereotypical movements and autistic characteristics. “Mental disease, and particularly autism, still carry the stigma of bad parenting,” said Alysson Muotri, an assistant professor in the Department of Molecular and Cellular Medicine at the University of California, San Diego School of Medicine, and one of the study’s authors. “We show very clearly that autism is a biological disease that is caused by a developmental defect directly affecting brain cells.”
Because almost all cases of Rett syndrome are caused by a single mutation in the MeCP2 gene, the team took skin biopsies from patients carrying the mutated gene. By exposing the skin cells to four reprogramming factors, they “turned back the clock,” triggering the cells to look and act like embryonic stem cells. Known at this point as “induced pluripotent” stem cells, the Rett-derived cells were indistinguishable from their normal counterparts.
It was only after the team had patiently coaxed the stem cells to develop into fully functioning neurons — a process that can take up to several months — that they were able to discern differences between the two. Neurons carrying the MeCP2 mutations had smaller cell bodies, a reduced number of synapses and dendritic spines, and electrophysical defects, indicating that things start to go wrong early in development. “It is quite amazing that we can recapitulate a psychiatric disease in a Petri dish,” said author Fred Gage, a professor in the Salk Laboratory of Genetics and holder of the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Diseases. “Being able to study Rett neurons in a dish allows us to identify subtle alterations in the function of the neuronal circuitry that we never had access to before.”
The team also found that insulin-like growth factor 1 (IGF-1) — a hormone that has a role in regulating cell growth and neuronal development — was able to reverse some of the symptoms of Rett syndrome by restoring proper function to Rett neurons grown in culture. In summary, they found that IGF-1 treatment increased the number of synapses and spines, reverting the neurons to a closer-to-normal stage. This finding suggests that autism is not necessarily permanent and could be at least partially reversible. The new research also opens up the prospect of developing a drug treatment for Rett syndrome and other forms of autism. “Rett syndrome is sometimes considered a ‘Rosetta Stone’ that can help us to understand other developmental neurological disorders since it shares genetic links with other conditions such as autism and schizophrenia,” said author Maria Carol Marchetto, a postdoctoral researcher in the Laboratory of Genetics at the Salk Institute.
Along with Chen, Muotri, Gage, and Marchetto, Gage, and Marchetto, other researchers who contributed to the work include Cassiano Carromeu, Allan Acab, Gene Yeo at the University of California, San Diego; and Diana Yu and Yangling Mu at the Salk Institute for Biological Studies.
This work was supported by the Emerald Foundation Young Investigator Award, the National Institutes of Health through the NIH Director’s New Innovator Award Program, the California Institute for Regenerative Medicine, The Lookout Fund, and the Picower Foundation.
Researchers Use Skin Cells to Study Autism in Petri Dish
November 15, 2010 at 4:00 AM by Gant Team · Leave a Comment
By Barbara Kennedy, Penn State
A team of researchers has used stem cells taken from the skin of patients with Rett syndrome — the most physically disabling of the autism disorders — to replicate autism in the lab and to study how the disease affects brain cells. The team’s findings, to be published on Nov. 12 in the journal Cell, reveal disease-specific cellular defects, such as fewer functional connections between particular neurons, and demonstrate these defects are reversible. The results raise the hope that, one day, autism may become a treatable condition.
“The beauty and excitement of this new work is the demonstration that we can use patients’ skin to study autism,” said Gong Chen, associate professor of biology at Penn State and one of the study’s authors. Before this research, scientists had been limited to studying the brains of people with autistic-spectrum disorders via imaging technologies or with postmortem brain tissues. “The fully-functional neurons derived from skin are no different in their electrophysiology properties from neurons isolated from the brain. I believe this study, together with other recent studies, will provide hope for patient-specific stem-cell therapy in treating some diseases that currently are difficult to cure.”
Rett syndrome primarily affects girls, and the symptoms often become apparent just after they have learned to walk and say a few words. Affected children regress into an infant-like state, losing speech and motor skills, and developing stereotypical movements and autistic characteristics. “Mental disease, and particularly autism, still carry the stigma of bad parenting,” said Alysson Muotri, an assistant professor in the Department of Molecular and Cellular Medicine at the University of California, San Diego School of Medicine, and one of the study’s authors. “We show very clearly that autism is a biological disease that is caused by a developmental defect directly affecting brain cells.”
Because almost all cases of Rett syndrome are caused by a single mutation in the MeCP2 gene, the team took skin biopsies from patients carrying the mutated gene. By exposing the skin cells to four reprogramming factors, they “turned back the clock,” triggering the cells to look and act like embryonic stem cells. Known at this point as “induced pluripotent” stem cells, the Rett-derived cells were indistinguishable from their normal counterparts.
It was only after the team had patiently coaxed the stem cells to develop into fully functioning neurons — a process that can take up to several months — that they were able to discern differences between the two. Neurons carrying the MeCP2 mutations had smaller cell bodies, a reduced number of synapses and dendritic spines, and electrophysical defects, indicating that things start to go wrong early in development. “It is quite amazing that we can recapitulate a psychiatric disease in a Petri dish,” said author Fred Gage, a professor in the Salk Laboratory of Genetics and holder of the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Diseases. “Being able to study Rett neurons in a dish allows us to identify subtle alterations in the function of the neuronal circuitry that we never had access to before.”
The team also found that insulin-like growth factor 1 (IGF-1) — a hormone that has a role in regulating cell growth and neuronal development — was able to reverse some of the symptoms of Rett syndrome by restoring proper function to Rett neurons grown in culture. In summary, they found that IGF-1 treatment increased the number of synapses and spines, reverting the neurons to a closer-to-normal stage. This finding suggests that autism is not necessarily permanent and could be at least partially reversible. The new research also opens up the prospect of developing a drug treatment for Rett syndrome and other forms of autism. “Rett syndrome is sometimes considered a ‘Rosetta Stone’ that can help us to understand other developmental neurological disorders since it shares genetic links with other conditions such as autism and schizophrenia,” said author Maria Carol Marchetto, a postdoctoral researcher in the Laboratory of Genetics at the Salk Institute.
Along with Chen, Muotri, Gage, and Marchetto, Gage, and Marchetto, other researchers who contributed to the work include Cassiano Carromeu, Allan Acab, Gene Yeo at the University of California, San Diego; and Diana Yu and Yangling Mu at the Salk Institute for Biological Studies.
This work was supported by the Emerald Foundation Young Investigator Award, the National Institutes of Health through the NIH Director’s New Innovator Award Program, the California Institute for Regenerative Medicine, The Lookout Fund, and the Picower Foundation.
Monday, November 15, 2010
Jill's House
There is a new respite resource in Northern Virginia. It is called Jill's House and sounds very impressive from what I have heard and read. Unofficially, I have heard that they are working with other area churches to help set up other similar centers and outreach programs to families that include a disabled child.
Here is a Washington Post article about Jill's house:
copy and past this URL to read more:
http://www.washingtonpost.com/wp-dyn/content/article/2010/09/29/AR2010092903265.html
In addition, you can go to Jillshouse.org and visit the website where you can take a video-tour of the facility and listen to some of the families that are served. I was very impressed by the facility after watching the video-tour. It certainly is well-designed and welcoming and is open to families of any faith (or no religious affiliation at all).
I do not belong to the McLean Bible Church but know people who do. They have shared with me that the minister has a disabled daughter and she was the inspiration to begin an outreach program to help members attend services while the children received the care they needed. This respite center grew from that original outreach program. I hope the idea spreads!
Here is a Washington Post article about Jill's house:
copy and past this URL to read more:
http://www.washingtonpost.com/wp-dyn/content/article/2010/09/29/AR2010092903265.html
In addition, you can go to Jillshouse.org and visit the website where you can take a video-tour of the facility and listen to some of the families that are served. I was very impressed by the facility after watching the video-tour. It certainly is well-designed and welcoming and is open to families of any faith (or no religious affiliation at all).
I do not belong to the McLean Bible Church but know people who do. They have shared with me that the minister has a disabled daughter and she was the inspiration to begin an outreach program to help members attend services while the children received the care they needed. This respite center grew from that original outreach program. I hope the idea spreads!
Monday, September 20, 2010
Emergency Preparedness
Dennis Debbaudt is a name that appears frequently in information regarding training about Autism to first responders in emergencies.
There is a document that contains some suggestions about how to prepare for an emergency ahead a time. To read about these suggestions, go to this link. I found that it contained some information that I was unaware of. For example, did you know that some communities have a 911 special needs database? I didn't. You can provide information about the person in your home with special needs in advance of an emergency in case you are unable to communicate the information yourself. Did you know that there are decals for your car and home that let first responders know that someone with autism may be present? I didn't.
Copy and paste this URL to read more:
http://www.autismriskmanagement.com/documents/autism_emergency.pdf
There is a document that contains some suggestions about how to prepare for an emergency ahead a time. To read about these suggestions, go to this link. I found that it contained some information that I was unaware of. For example, did you know that some communities have a 911 special needs database? I didn't. You can provide information about the person in your home with special needs in advance of an emergency in case you are unable to communicate the information yourself. Did you know that there are decals for your car and home that let first responders know that someone with autism may be present? I didn't.
Copy and paste this URL to read more:
http://www.autismriskmanagement.com/documents/autism_emergency.pdf
Sunday, September 19, 2010
Are Law Enforcement Officers Trained to Respond to Citizens with ASD?
I am curious about what resources are provided to those people who work in our community to respond to emergencies. Do they know the best ways to help our "special" citizens, or might they accidentally make things worse because of lack of training or knowledge?
I am trying to find out the answers to these questions. I always find the internet to be one good source of information and an easy place to begin finding answers.
Here is one article about some local programs:
Copy and paste this URL to read about some Maryland and Virginia counties in the D.C. area:
http://technorati.com/lifestyle/family/article/law-enforcement-training-for-autism-related1/
Here is a link to information about training for first responders:
Copy and paste this URL to read about this training program :
http://www.leanonus.org/trainings.html
This link is about a conference in North Carolina that was held for state law enforcement after a man with autism died while in police custody.
Copy and paste this link to read about it.
http://asa.confex.com/asa/2006/techprogram/S2232.HTM
This newsweek article relates several specific instances of misunderstandings that have happened when law enforcement came into contact with autistic individuals and explains how organizations and concerned citizens are trying to provide better information to officers through training.
Copy and paste this link to read more about it:
http://www.newsweek.com/2010/07/08/is-sitting-while-autistic-a-crime.html
This link is to the Autism Society and is about pamphlets that they offer to assist first reponders and law enforcement.
Copy and paste this URL to see this information:
http://www.autism-society.org/site/PageServer?pagename=research_safeandsound_firstresponders
So, from my internet search, I am still not clear on what, if any, training has been provided to Maryland state officers, Montgomery county officers, or the city forces of Germantown or Gaithersburg where we would be mostly like to encounter the police. Looks like more research is needed. At least I now know that some of our country's jurisdictions are addressing this issue.
If you know more about this topic, please add your comments.
Postscript: I learned from Craig Schultz of the Autism Socieity of America, that trainings to Montgomery County, MD and Rockville, Md police have been provided by the ASA. Also, Maryland State police have had training in general mental health issues, but not specifically ASD's or developmental disabilities, but that training could be considered in the future.
I am trying to find out the answers to these questions. I always find the internet to be one good source of information and an easy place to begin finding answers.
Here is one article about some local programs:
Copy and paste this URL to read about some Maryland and Virginia counties in the D.C. area:
http://technorati.com/lifestyle/family/article/law-enforcement-training-for-autism-related1/
Here is a link to information about training for first responders:
Copy and paste this URL to read about this training program :
http://www.leanonus.org/trainings.html
This link is about a conference in North Carolina that was held for state law enforcement after a man with autism died while in police custody.
Copy and paste this link to read about it.
http://asa.confex.com/asa/2006/techprogram/S2232.HTM
This newsweek article relates several specific instances of misunderstandings that have happened when law enforcement came into contact with autistic individuals and explains how organizations and concerned citizens are trying to provide better information to officers through training.
Copy and paste this link to read more about it:
http://www.newsweek.com/2010/07/08/is-sitting-while-autistic-a-crime.html
This link is to the Autism Society and is about pamphlets that they offer to assist first reponders and law enforcement.
Copy and paste this URL to see this information:
http://www.autism-society.org/site/PageServer?pagename=research_safeandsound_firstresponders
So, from my internet search, I am still not clear on what, if any, training has been provided to Maryland state officers, Montgomery county officers, or the city forces of Germantown or Gaithersburg where we would be mostly like to encounter the police. Looks like more research is needed. At least I now know that some of our country's jurisdictions are addressing this issue.
If you know more about this topic, please add your comments.
Postscript: I learned from Craig Schultz of the Autism Socieity of America, that trainings to Montgomery County, MD and Rockville, Md police have been provided by the ASA. Also, Maryland State police have had training in general mental health issues, but not specifically ASD's or developmental disabilities, but that training could be considered in the future.
Promising new drug test for symptoms of ASD
Copy and past this URL to read the full article about this new drug test:
http://www.technologyreview.com/biomedicine/26284/?p1=A2&a=f#afteradbody
This is one that I would ask my daughter's doctor to look into. Here is just an the beginning of the article:
A Drug Shows Promise in Autism
A chemical that alters chemical signaling seems to ease anxiety and other symptoms.
By Karen Weintraub
WEDNESDAY, SEPTEMBER 15, 2010
Though the research is still preliminary, scientists appear to be closing in on a molecular explanation for at least some cases of autism. Research in lab animals, cadavers, and now in a small clinical trial in children seems to support the idea that autism is caused by a lack of chemical regulation in synapses, the junction between brain cells.
Alleviating autism: A drug called arbaclofen (its chemical structure is shown above) appears to ease anxiety and some other symptoms in a small study of children with autism.
Credit: Seaside Therapeutics
The latest evidence for this comes from a clinical trial of 25 autistic children ages six to 17. The trial was conducted by Seaside Therapeutics of Cambridge, Massachusetts. In unpublished data released last week, the company says the children seemed to respond well to the drug arbaclofen and suffer minimal side effects. Arbaclofen is related to the drug baclofen, a commonly used muscle relaxer and antispastic agent. The children took the drug for eight weeks, and most saw significant improvements in measures of irritability and communication, two common problems in autism.
The finding is considered preliminary because the study was not placebo-controlled, meaning scientists couldn't compare children taking the drug to those taking a placebo. This is especially important in studies of autism because many of the tests used to assess patients are subjective, including behavioral evaluations from parents and clinicians, says Jeremy Veenstra-VanderWeele, assistant professor of psychiatry, pediatrics, and pharmacology at Vanderbilt University. About a half-dozen of his patients were involved in the trial.
http://www.technologyreview.com/biomedicine/26284/?p1=A2&a=f#afteradbody
This is one that I would ask my daughter's doctor to look into. Here is just an the beginning of the article:
A Drug Shows Promise in Autism
A chemical that alters chemical signaling seems to ease anxiety and other symptoms.
By Karen Weintraub
WEDNESDAY, SEPTEMBER 15, 2010
Though the research is still preliminary, scientists appear to be closing in on a molecular explanation for at least some cases of autism. Research in lab animals, cadavers, and now in a small clinical trial in children seems to support the idea that autism is caused by a lack of chemical regulation in synapses, the junction between brain cells.
Alleviating autism: A drug called arbaclofen (its chemical structure is shown above) appears to ease anxiety and some other symptoms in a small study of children with autism.
Credit: Seaside Therapeutics
The latest evidence for this comes from a clinical trial of 25 autistic children ages six to 17. The trial was conducted by Seaside Therapeutics of Cambridge, Massachusetts. In unpublished data released last week, the company says the children seemed to respond well to the drug arbaclofen and suffer minimal side effects. Arbaclofen is related to the drug baclofen, a commonly used muscle relaxer and antispastic agent. The children took the drug for eight weeks, and most saw significant improvements in measures of irritability and communication, two common problems in autism.
The finding is considered preliminary because the study was not placebo-controlled, meaning scientists couldn't compare children taking the drug to those taking a placebo. This is especially important in studies of autism because many of the tests used to assess patients are subjective, including behavioral evaluations from parents and clinicians, says Jeremy Veenstra-VanderWeele, assistant professor of psychiatry, pediatrics, and pharmacology at Vanderbilt University. About a half-dozen of his patients were involved in the trial.
IAN Topic on Bullying of ASD children
As I have mentioned in a previous posting, IAN, is a helpful website and here is an article relating to IAN on the topic of Bullying at school for ASD kids.
Find the article by copying and pasting this URL;
http://www.crestonnewsadvertiser.com/articles/ara/2010/09/16/8049210103/index.xml
More information on this topic can be found on the IAN website
Find the article by copying and pasting this URL;
http://www.crestonnewsadvertiser.com/articles/ara/2010/09/16/8049210103/index.xml
More information on this topic can be found on the IAN website
Saturday, September 18, 2010
Emergency Resources in the Community
Yesterday, I held a training on behavior management and safe strategies for V's personal support staff. We have some new staff who have been trained by a local agency and their strategies and responses were not exactly on the same page with the staff who have been with us longer. My hope was to get them all using the same strategies and working well together with each other when they take V into the community. Although V has 2:1 staffing for community time, one of the staff mentioned during the training that she thought there may be circumstances where she would call the police for assistance. This has never happened in all of V's life and I have never had to give consideration as to what consequences such a action might have for all parties involved.
The trainer informed the staff that they had more and better training on how to manage V than the police have, and that such an action would probably result in V being placed in handcuffs and taken somewhere in a police car, and this would not be the best solution to the problem.
The fact that someone on staff was even thinking of this as a possibility concerned me enough to follow up on this topic with a personal friend who is the captain of the local police station. I asked him what would happen if my staff called the police while out in the community with V in a situation they did not feel they could safely handle. He confirmed what the trainer had told my staff, that they would probably put her in cuffs and take her to the emergency room in the police car. He was unfamiliar with the basket hold or other safe restraints and escorts that my staff have been trained in, and so this is probably the case with the officers on the city force.
He suggested that I call the community services division of his city and speak to Crystal,the director for guidance. I called her right away and spoke to her at length about my issue. She was not sure about the best recourse in such a situation, but suggested that I contact the Mobile Crisis team at the Crisis Center for the county department of health and hygiene.
I followed this advice and explained my situation to Beth at the Crisis Center. She explained to me that the people at the Mobile crisis Team were trained to talk to Verbal individuals who were in a mental health crisis, and that the team had a hands-off policy. When they respond to a crisis they bring police with them. She thought that a better resource, although not a perfect option, was to call the police non-emergency number and request a CIT officer, who is someone who has been through a 40-hour advanced mental health training and who she thought may be more likely to listen to the recommendations of the support staff.
Basically, my conversations made the Mobile Crisis Team aware that there is a population of people in the community that they are not prepared to serve. I wonder if an awareness of a gap in services might lead to some action to fill that gap.
My friend, the police captain, sent a follow up message to see if his referral had been helpful, and I filled him in, at the same time providing the contact information for our trainer in case he ever feels it would be appropriate to provide training to his officers for how to best manage citizens with autism or developmental disabilities in the community who are agitated and not necessarily able to talk it through.
I learned a lot through the question raised by my staff about using emergency resources in the community, and I have a lot more to learn to feel that I have a good solution for my staff in these situation. I need to provide them with guidelines and emergency contacts for exactly this kind of scenario, although, to date, they have never been unable to resolve a problem in community without additional help.
They have the contact information for my husband and I, doctors, therapists, etc... but what I think they actually want is just an extra strong body to assist in the moment. Since my husband and I are not always close by, I could give permission for them to call an off-duty staff member for assistance, since those people would have the necessary training and experience. I can provide the non-emergency police number for a CIT officer, although I don't know if that would be more helpful or harmful, and usually V calms down before anyone else can actually get to the location she is at anyway.
If anyone knows of any better solutions to these situations, please post your comments.
The trainer informed the staff that they had more and better training on how to manage V than the police have, and that such an action would probably result in V being placed in handcuffs and taken somewhere in a police car, and this would not be the best solution to the problem.
The fact that someone on staff was even thinking of this as a possibility concerned me enough to follow up on this topic with a personal friend who is the captain of the local police station. I asked him what would happen if my staff called the police while out in the community with V in a situation they did not feel they could safely handle. He confirmed what the trainer had told my staff, that they would probably put her in cuffs and take her to the emergency room in the police car. He was unfamiliar with the basket hold or other safe restraints and escorts that my staff have been trained in, and so this is probably the case with the officers on the city force.
He suggested that I call the community services division of his city and speak to Crystal,the director for guidance. I called her right away and spoke to her at length about my issue. She was not sure about the best recourse in such a situation, but suggested that I contact the Mobile Crisis team at the Crisis Center for the county department of health and hygiene.
I followed this advice and explained my situation to Beth at the Crisis Center. She explained to me that the people at the Mobile crisis Team were trained to talk to Verbal individuals who were in a mental health crisis, and that the team had a hands-off policy. When they respond to a crisis they bring police with them. She thought that a better resource, although not a perfect option, was to call the police non-emergency number and request a CIT officer, who is someone who has been through a 40-hour advanced mental health training and who she thought may be more likely to listen to the recommendations of the support staff.
Basically, my conversations made the Mobile Crisis Team aware that there is a population of people in the community that they are not prepared to serve. I wonder if an awareness of a gap in services might lead to some action to fill that gap.
My friend, the police captain, sent a follow up message to see if his referral had been helpful, and I filled him in, at the same time providing the contact information for our trainer in case he ever feels it would be appropriate to provide training to his officers for how to best manage citizens with autism or developmental disabilities in the community who are agitated and not necessarily able to talk it through.
I learned a lot through the question raised by my staff about using emergency resources in the community, and I have a lot more to learn to feel that I have a good solution for my staff in these situation. I need to provide them with guidelines and emergency contacts for exactly this kind of scenario, although, to date, they have never been unable to resolve a problem in community without additional help.
They have the contact information for my husband and I, doctors, therapists, etc... but what I think they actually want is just an extra strong body to assist in the moment. Since my husband and I are not always close by, I could give permission for them to call an off-duty staff member for assistance, since those people would have the necessary training and experience. I can provide the non-emergency police number for a CIT officer, although I don't know if that would be more helpful or harmful, and usually V calms down before anyone else can actually get to the location she is at anyway.
If anyone knows of any better solutions to these situations, please post your comments.
Friday, September 3, 2010
Learn a Little Bit About Human Resources
No matter how well you screen and train your employees, performance issues are bound to occur from time to time. Some will be minor and some serious. While the care of the disabled person is the first consideration, some knowledge about correct HR procedures can protect you from a possible law suit for wrongful termination, and can protect you from unemployment claims that can raise your unemployment insurance premiums on your other staff.
Maryland DDA provides New Directions Waiver Support Brokers with a manual that includes a disciplinary form and some guidelines. It is your judgement, however, that will determine when to merely provide a verbal reminder about your procedures to a staff member, and when to put it in writing and impose a suspension or to terminate employment. I had a lengthy conversation with the Human Resources specialist at the ARC and learned a lot from her. Some of what she had to say was surprising to me. Unless V's safety has been deliberately put at risk, I try to use mistakes as teaching opportunities,starting with a mild verbal reminder, or a refresher training on the issue at hand. I keep a record of these issues/incidents somewhere so that they can be mentioned in the next performance review, and so that I have a record if the same problem occurs again. If the problem continues, then a written warning is presented, signed by all parties, and goes into the employee file. If the issue is serious enough, I may skip the simple written warning and write up the incident, imposing a suspension for a day or longer, without pay.
Your chances of winning an in an unemployment claim if termination becomes necessary, are better if you can show a written record of performance issues, especially a pattern of behavior that has not responded to counseling.
Even if all you want is to have good care for yourself or a loved one, having employees makes you an employer and that brings all of the legal responsibilities that go along with that job, whether it is a paid job or not. It can be unpleasant, frustrating and stressful at times and it is one price paid for having to depend on others for care.
Good luck to all of you out there who are managing these responsibilities.
Maryland DDA provides New Directions Waiver Support Brokers with a manual that includes a disciplinary form and some guidelines. It is your judgement, however, that will determine when to merely provide a verbal reminder about your procedures to a staff member, and when to put it in writing and impose a suspension or to terminate employment. I had a lengthy conversation with the Human Resources specialist at the ARC and learned a lot from her. Some of what she had to say was surprising to me. Unless V's safety has been deliberately put at risk, I try to use mistakes as teaching opportunities,starting with a mild verbal reminder, or a refresher training on the issue at hand. I keep a record of these issues/incidents somewhere so that they can be mentioned in the next performance review, and so that I have a record if the same problem occurs again. If the problem continues, then a written warning is presented, signed by all parties, and goes into the employee file. If the issue is serious enough, I may skip the simple written warning and write up the incident, imposing a suspension for a day or longer, without pay.
Your chances of winning an in an unemployment claim if termination becomes necessary, are better if you can show a written record of performance issues, especially a pattern of behavior that has not responded to counseling.
Even if all you want is to have good care for yourself or a loved one, having employees makes you an employer and that brings all of the legal responsibilities that go along with that job, whether it is a paid job or not. It can be unpleasant, frustrating and stressful at times and it is one price paid for having to depend on others for care.
Good luck to all of you out there who are managing these responsibilities.
Thursday, August 12, 2010
Trust, But Verify
There is a reason they say, "Trust, but verify." When you have others paid to care for a disabled loved one, there is always the fear that someone will take advantage of the vulnerability of the individual they are caring for. It has happened to me more than once with V.
Yesterday was a sad day. I learned that my trust had been betrayed and I had to release a long-term employee and discipline two others who remain employed.
If you allow others to take your disabled family member out into the community and they use your vehicle, invest in a GPS tracking device as soon as possible and install it on the vehicle. A verbal or written report is not sufficient to know the truth about where your loved one has been if they are not able to tell you themselves. If you care where your loved one is spending their time and can't be there personally, then you need to KNOW, not think you know based on the word, written or verbal, of your employees.
It is worth the cost. New Directions won't cover this precautionary expense, so it will be out of pocket for you.
Yesterday was a sad day. I learned that my trust had been betrayed and I had to release a long-term employee and discipline two others who remain employed.
If you allow others to take your disabled family member out into the community and they use your vehicle, invest in a GPS tracking device as soon as possible and install it on the vehicle. A verbal or written report is not sufficient to know the truth about where your loved one has been if they are not able to tell you themselves. If you care where your loved one is spending their time and can't be there personally, then you need to KNOW, not think you know based on the word, written or verbal, of your employees.
It is worth the cost. New Directions won't cover this precautionary expense, so it will be out of pocket for you.
Sunday, August 8, 2010
Want to see videos of V's daily activities?
V has a youtube channel. Search "ValerieinBoyds" on youtube to see short video clips of some of her activities. Many of these were filmed using a small flip video camera by the personal support staff.
Sunday, June 27, 2010
Documentation is Important
I have to admit that I was nervous about whether or not Fitness for Health would be approved in this new year's Plan of Care and Budget. I submitted about 10 pages of documentation to support the need for the services that Fitness for Health can provide. Well, it worked and the request was approved. Fitness Centers and personal trainers are on the list of items that will not be approved by medicaid, so documentation is critical to get an exception made in this case. I included a letter from V's occupational therapist that explained how the center could address V's O.T. needs, among the documents that I submitted.
Art supplies, which are used every day with V to manage anxiety and reduce agitation, were not approved this year. I did not submit supporting documentation, but my resource coordinator wondered if it would have made a difference if I had. She is checking and I will try again, with documentation and see if it helps. The art activities also work on some of V's O.T. goals, so there is an opportunity for supporting documentation from the O.T. as well as from the behavior analyst.
So, our lesson this year when it comes to developing a good plan of care is to include as much supporting documentation to support the need for the services that you are requesting as you can.
Art supplies, which are used every day with V to manage anxiety and reduce agitation, were not approved this year. I did not submit supporting documentation, but my resource coordinator wondered if it would have made a difference if I had. She is checking and I will try again, with documentation and see if it helps. The art activities also work on some of V's O.T. goals, so there is an opportunity for supporting documentation from the O.T. as well as from the behavior analyst.
So, our lesson this year when it comes to developing a good plan of care is to include as much supporting documentation to support the need for the services that you are requesting as you can.
Friday, May 14, 2010
Getting the Hang of Medical Appointments
This week it was time for the dreaded visit to the doctor so that V could be cleared for anesthesia. Next week she has a dental cleaning scheduled at Shady Grove Hospital, and any necessary scaling or restoration work that they find necessary. Last year, this medical appointment was a disaster because her new doctor and his staff did not understand how badly things can go when V has to wait in an office for a long time.
This year, I called the doctor's office before leaving our house for the appointment, to make sure that the doctor was running on schedule. Good thing that I called. He was not even in the office at 15 minutes prior to our appointment and still had 2 patients waiting ahead of us to see him. The nurse agreed to call me when he finished with the first patient, and we agreed that we would wait at home for that call, and only leave home after we heard from her. An hour later she called us, we left home, and when we arrived at the office the doctor was ready to see us immediately. V was reasonably cooperative during the exam and transitions in and out of the office. I had time to talk with the doctor about her health and to get a blood work order as part of an annual physical exam. This was a dramatic improvement over our experience last year.
We have started calling the psychiatrist office ahead of the appointment to determine if she is running on time as well, and then adjusting our arrival at the office accordingly to avoid the wait in the office or sitting in the car for a lengthy period of time. This is reducing the stress and anxiety related to these appointments for us all.
Yesterday, I spoke to the nurse at the hospital regarding the procedure that is scheduled for Monday morning. She was very understanding about the difficulty of waiting in a waiting room, and suggested that we arrive an hour before the procedure instead of the standard 2 hours. Then, I will go inside and register her while she waits in the car with my husband. When they are ready to take her back to a room, then we will bring her inside the hospital and avoid time sitting in the waiting area.
As the Beatles sing, "It's getting better all the time." So true.
This year, I called the doctor's office before leaving our house for the appointment, to make sure that the doctor was running on schedule. Good thing that I called. He was not even in the office at 15 minutes prior to our appointment and still had 2 patients waiting ahead of us to see him. The nurse agreed to call me when he finished with the first patient, and we agreed that we would wait at home for that call, and only leave home after we heard from her. An hour later she called us, we left home, and when we arrived at the office the doctor was ready to see us immediately. V was reasonably cooperative during the exam and transitions in and out of the office. I had time to talk with the doctor about her health and to get a blood work order as part of an annual physical exam. This was a dramatic improvement over our experience last year.
We have started calling the psychiatrist office ahead of the appointment to determine if she is running on time as well, and then adjusting our arrival at the office accordingly to avoid the wait in the office or sitting in the car for a lengthy period of time. This is reducing the stress and anxiety related to these appointments for us all.
Yesterday, I spoke to the nurse at the hospital regarding the procedure that is scheduled for Monday morning. She was very understanding about the difficulty of waiting in a waiting room, and suggested that we arrive an hour before the procedure instead of the standard 2 hours. Then, I will go inside and register her while she waits in the car with my husband. When they are ready to take her back to a room, then we will bring her inside the hospital and avoid time sitting in the waiting area.
As the Beatles sing, "It's getting better all the time." So true.
Tuesday, May 11, 2010
Is There Justification for Denying Access?
When V was in school, I was surprised by some of the things that she was denied access to. I say to you, as advocates for your child, PUSH!
Push for an explanation that satisfies you, and then, when you get one, work to find a way that access can work. Ask the question, "What, other than my child, has to change to make access possible?" "What steps can we take to make this happen?"
At one point, I was told that V could not have access to a computer at school because she would break the equipment when she became agitated. Well, she had never broken any computer equipment, including the equipment that she had access to at home. The excuse was mere supposition. With supervision, which should not have been a problem since a 1:1 aide was part of her IEP, there really should have been little risk. Years later, when we wanted to put a computer in her room, and knew that she would have to be alone with it at times, we had a computer station designed that had a plexiglass door in front of the monitor, and locking keyboard drawer that solved the problem. I made the special education department of MCPS at the board of Ed aware of the design and the company that could duplicate it for them, so that they would not have to deny another special needs student access to technology. As far as I know, they have not taken advantage of the desk design, but have found the money to put electronic signs in front of all the local schools. Now, which expense would have had more impact on student learning?
It is your tax money that is being spent, and you have a right to have a say in how it is spent. Speak up!
I found out about the Dynavox voice output device years ago (1996 to be exact). I thought it could open up all kinds of possibilities for V in the realm of communication. Insurance would pay for it if a Speech and Language pathologist would write a report that indicated medical need. Someone who can't communicate if they are in pain, hot, cold, or tired is certainly at medical risk without a means to communicate with doctors and family. Instead of supporting the goal and working toward it, I was told that V was not ready for such a sophisticated device and therefore no recommendation would be written for the insurance. She was 12 or 13 then, and in the rest of her years of schooling, she was never any closer to ready for such a sophisticated device, and never receptive to speech services. Only since the end of school have we seen steady and significant progress toward those goals. Was it a lack of belief in her ability to make progress that kept school personnel from supporting access to technology and working to get her ready to benefit from it? Did they just not believe that she had enough potential to make the investment of money and time worthwhile? Was there a lack of creativity and motivation to think "outside the box" and look for a different delivery model of services that she would be receptive to?
In retrospect, even though I was always told that I was a strong advocate for V, "a poster parent" as one administrator called me, I wish I had not taken no for an answer, that I had pushed harder and perhaps V would have lost fewer years of progress.
Where does the negative thinking and dismissive attitude toward our children come from? Don't accept it.
* incidentally, our speech therapist works part time for MCPS, and she is awesome!
Push for an explanation that satisfies you, and then, when you get one, work to find a way that access can work. Ask the question, "What, other than my child, has to change to make access possible?" "What steps can we take to make this happen?"
At one point, I was told that V could not have access to a computer at school because she would break the equipment when she became agitated. Well, she had never broken any computer equipment, including the equipment that she had access to at home. The excuse was mere supposition. With supervision, which should not have been a problem since a 1:1 aide was part of her IEP, there really should have been little risk. Years later, when we wanted to put a computer in her room, and knew that she would have to be alone with it at times, we had a computer station designed that had a plexiglass door in front of the monitor, and locking keyboard drawer that solved the problem. I made the special education department of MCPS at the board of Ed aware of the design and the company that could duplicate it for them, so that they would not have to deny another special needs student access to technology. As far as I know, they have not taken advantage of the desk design, but have found the money to put electronic signs in front of all the local schools. Now, which expense would have had more impact on student learning?
It is your tax money that is being spent, and you have a right to have a say in how it is spent. Speak up!
I found out about the Dynavox voice output device years ago (1996 to be exact). I thought it could open up all kinds of possibilities for V in the realm of communication. Insurance would pay for it if a Speech and Language pathologist would write a report that indicated medical need. Someone who can't communicate if they are in pain, hot, cold, or tired is certainly at medical risk without a means to communicate with doctors and family. Instead of supporting the goal and working toward it, I was told that V was not ready for such a sophisticated device and therefore no recommendation would be written for the insurance. She was 12 or 13 then, and in the rest of her years of schooling, she was never any closer to ready for such a sophisticated device, and never receptive to speech services. Only since the end of school have we seen steady and significant progress toward those goals. Was it a lack of belief in her ability to make progress that kept school personnel from supporting access to technology and working to get her ready to benefit from it? Did they just not believe that she had enough potential to make the investment of money and time worthwhile? Was there a lack of creativity and motivation to think "outside the box" and look for a different delivery model of services that she would be receptive to?
In retrospect, even though I was always told that I was a strong advocate for V, "a poster parent" as one administrator called me, I wish I had not taken no for an answer, that I had pushed harder and perhaps V would have lost fewer years of progress.
Where does the negative thinking and dismissive attitude toward our children come from? Don't accept it.
* incidentally, our speech therapist works part time for MCPS, and she is awesome!
Wednesday, April 14, 2010
Fitness for Health: 2nd Visit
Just because Nyle (V's O.T.) and I were impressed by the facility and founder of Fitness for Health, didn't mean that V would feel the same. The only way to decide if the center would be a good fit for V was to take her there to work on the equipment with the FFH trainer that would be working with her as a client. Today we did that. I was hoping that Nyle could join us, but her schedule didn't allow her to be present again, but since we had left her evaluation with Marc when we went for the first visit together, they were prepared.
The timing of the visit was not ideal because they had several other children there who were very active, loud, and dealing with emotions... all issues that could have caused behavioral issues with V. She handled the sensory load pretty well. First, she saw a bag that someone had left on the trampoline, grabbed it and looked inside and found food. Uh Oh. Food obsession triggered. It was tricky getting it away and out of site, and required that one of her own snacks be retrieved from the car and brought in for her. Time was lost to snacking. Now they know not to have food laying around when she comes again. We went first to the the larger of the two rooms that use a black light and floor lights to make equipment glow in the dark. V surprised us all by kicking around the glowing soccer ball. I didn't know she could or would kick a ball, so that was good to see. The balloon caused a little sensory overload and V needed to sit down and collect herself before continuing. Then we went into the main room with the rock wall and 30 foot long trampoline. She walked with me over several long, 10 inch thick floor mats that made for a nice, unsteady surface. Good. Walking on unstable surfaces is one of her OT tasks to work on her balance. She walked on the trampoline. Good again. We tried out the equipment that required her to tap on various lights to put them out and involved bending, stretching across, and stretching up, along with visual and auditory tracking. At first we motivated her to tap the lights with stickers, but soon she became so engaged with the activity and the verbal praise that everyone was giving her, that she forgot about the stickers and only cared about finding and tapping the lights. For a first visit, she engaged quickly in each activity presented and experienced fun and success. She was in no hurry when it was time to go, and turned back around to the tire swing and crawled into it, hanging on it, smiling happily.
My decision was made. I can see that she can make progress on her goals at this place, where the staff are patient, skilled and understanding, the activities are motivating and fun. The staff agreed that she could benefit from the activities that they have to offer. Now I have to write it into the plan of care and budget for the new fiscal year, and justify it well with the O.T. evaluation and goals. I am crossing my fingers that it will be approved.
The timing of the visit was not ideal because they had several other children there who were very active, loud, and dealing with emotions... all issues that could have caused behavioral issues with V. She handled the sensory load pretty well. First, she saw a bag that someone had left on the trampoline, grabbed it and looked inside and found food. Uh Oh. Food obsession triggered. It was tricky getting it away and out of site, and required that one of her own snacks be retrieved from the car and brought in for her. Time was lost to snacking. Now they know not to have food laying around when she comes again. We went first to the the larger of the two rooms that use a black light and floor lights to make equipment glow in the dark. V surprised us all by kicking around the glowing soccer ball. I didn't know she could or would kick a ball, so that was good to see. The balloon caused a little sensory overload and V needed to sit down and collect herself before continuing. Then we went into the main room with the rock wall and 30 foot long trampoline. She walked with me over several long, 10 inch thick floor mats that made for a nice, unsteady surface. Good. Walking on unstable surfaces is one of her OT tasks to work on her balance. She walked on the trampoline. Good again. We tried out the equipment that required her to tap on various lights to put them out and involved bending, stretching across, and stretching up, along with visual and auditory tracking. At first we motivated her to tap the lights with stickers, but soon she became so engaged with the activity and the verbal praise that everyone was giving her, that she forgot about the stickers and only cared about finding and tapping the lights. For a first visit, she engaged quickly in each activity presented and experienced fun and success. She was in no hurry when it was time to go, and turned back around to the tire swing and crawled into it, hanging on it, smiling happily.
My decision was made. I can see that she can make progress on her goals at this place, where the staff are patient, skilled and understanding, the activities are motivating and fun. The staff agreed that she could benefit from the activities that they have to offer. Now I have to write it into the plan of care and budget for the new fiscal year, and justify it well with the O.T. evaluation and goals. I am crossing my fingers that it will be approved.
Tuesday, April 13, 2010
Good News for Asperger's and High-Functioning Autism or PDD
One of my Google Alerts about the latest research including an interesting article about a summer camp for youngsters that are on the autism spectrum, but high-functioning. Although, this description does not apply to V, there are many out there that might find some hope for improved social skills from reading about this program.
To get the whole story, copy and paste this URL :
http://www.canisius.edu/newsevents/display_story.asp?iNewsID=6402&strBack=default.asp
To get the whole story, copy and paste this URL :
http://www.canisius.edu/newsevents/display_story.asp?iNewsID=6402&strBack=default.asp
Bubble Blowing Happiness
Last night I came home and checked in on V and her staff. I found Aisha holding out the wand of bubble liquid to V's face and V was blowing with all her might and then reaching out to catch the bubbles. Aisha was laughing and praising V, and I joined in with clapping and approval. They were happy and having fun and I was happy too. First because Aisha was repeating an activity that she had observed during an OT session and was reinforcing the work that she knew Valerie needed, and second because V was doing so well and enjoying herself.
I couldn't wait to share my observation with our OT, and Nyle wrote back,
"You know, when I first started working with V*****, she couldn't blow a bubble because her oral-motor muscles were too weak and she couldn't calibrate her blowing to get enough force. This activity is very good for building up the muscles she needs to form words more clearly. It's also good for eye tracking and convergence, which helps to integrate the brain."
What a little thing, so insignificant to most children and parents, but important to us because it shows progress toward more important skills. Staff reinforcing what they observe specialists doing is what I have wanted to see and I am seeing it, more than ever, now.
I couldn't wait to share my observation with our OT, and Nyle wrote back,
"You know, when I first started working with V*****, she couldn't blow a bubble because her oral-motor muscles were too weak and she couldn't calibrate her blowing to get enough force. This activity is very good for building up the muscles she needs to form words more clearly. It's also good for eye tracking and convergence, which helps to integrate the brain."
What a little thing, so insignificant to most children and parents, but important to us because it shows progress toward more important skills. Staff reinforcing what they observe specialists doing is what I have wanted to see and I am seeing it, more than ever, now.
Friday, April 9, 2010
Real Feelings
It occurred to me that someone reading this might think that I am always hopeful and optimistic about V, our life and her future. Most of the time I just think that I wouldn't make anyone's life any easier by whining about the way that I hoped or wished things would be or should be. Most of the time I accept and live in the reality of our situation, counting my blessings and recognizing that it is hard to raise a child without any disabilities too, just in a different way. I have not had that pleasure myself, and I tried to share in it vicariously by teaching elementary school for a few years. It's not the same. Those children move on with their lives and most forget you were ever a part of their day to day routines (I think).
Like other parents who are told that their child is not developing normally, I got scared and sad, and grieved for the lost path that I thought we were going to take. I left the world of "This is what happens next in your child's development" and joined the world of "Who knows what will happen next, or when it will happen". I might as well have thrown away the child development book that I studied in college that explained what is typical at 2 years, 3 years, etc. There was no book and no person who could provide answers to questions like, "When will she talk?" "When will she learn to dress herself?" and "When will she read?" My only option was to love her, give her what help I could, and wait to see what would happen. Over time I learned to be her voice and to advocate for her with teachers, therapists and doctors. Sometimes I became really angry and frustrated with them all.
I tried to join a parent support group when V was very young, but came home from each meeting with a headache from the stress I experienced in those meetings. They were years ahead of us in their experiences and I could not relate to the things they were dealing with, but it frightened me that I might someday be able to. So, at that point, I determined that our lives were not going to revolve around V's disability. We were going to have lives that were as normal as possible, and I would do what I needed to do, but not immerse myself in the subject of what was wrong or missing in our lives. That was how I functioned without becoming overwhelmed by how different our lives were becoming from that of my friends. It was lonely and isolating being the only person I knew who was dealing with our particular kinds of troubles. As a single mother, I had no partner to share the ups and downs with. When V was very little, she was included in birthday parties that my friends with normal children held, but as she grew the invitations stopped coming. There were no invitations to come play and no little friends coming over to play with V, just the two of us at home. The children of my friends had grown and moved on to socialize with other children at their own developmental level. V was left behind, and me along with her. I continued to get together with other adults on my own when V spent the weekend with her dad, or I had a sitter, but the strong chance that V would have a meltdown and become aggressive or destructive, kept her from being part of those activities. Peers, outside of school, were non-existent. I could not imagine what it would be like to grow up without friends the way that she had to. I have always recognized that no matter how hard it has been for me to care for her at times, it has always been harder to live in her head 24/7/365. At least I got breaks to live a normal life, to escape stress and frustration. There have been times I have thought that if I had a chance to trade places with her, to give her a chance to live in a body that works as it should while I exist in the one that she has to, I would gladly make that trade so that she could have a chance to have friends, boyfriends, an education, a husband, children, a job, grandchildren, travel, sports....everything she has to miss out on because her body won't do what it was supposed to. I have stared into her eyes, looking for the loving, intelligent soul that I believe is trapped inside and I have wondered if we will finally get to have a real conversation when we get to heaven. I hope so. It would be tragic to never have that chance. I love her and I get to say it every day. She loves me, but never gets to tell me so, so she gives me smiles, hugs and kisses instead.
I try to keep an emotional distance from what we have both lost so that I can hold myself together enough to act on her behalf. If I talk about it too much, my throat gets tight and my body trembles like I am cold and need a sweater.
I try to be okay with the life that V has, but that doesn't mean that I don't miss what it should have been. I should have been sitting at her high school and college graduation while she walked proudly across the stage for her diploma (not certificate), and I should have been taking her prom and homecoming pictures after helping her shop for a dress. I should have congratulated her on her first job and I should be looking forward to her wedding and her children. It's not fair and we have both been robbed of what should have been.
So, if you read my posts and think that you are alone feeling sad, isolated, angry, helpless or frustrated, you are not alone at all. I choose to focus on those things that I can control to maintain my own mental health and to be the best mom I can be, and I look away from all those negative feelings most of the time. But only MOST of the time.
Like other parents who are told that their child is not developing normally, I got scared and sad, and grieved for the lost path that I thought we were going to take. I left the world of "This is what happens next in your child's development" and joined the world of "Who knows what will happen next, or when it will happen". I might as well have thrown away the child development book that I studied in college that explained what is typical at 2 years, 3 years, etc. There was no book and no person who could provide answers to questions like, "When will she talk?" "When will she learn to dress herself?" and "When will she read?" My only option was to love her, give her what help I could, and wait to see what would happen. Over time I learned to be her voice and to advocate for her with teachers, therapists and doctors. Sometimes I became really angry and frustrated with them all.
I tried to join a parent support group when V was very young, but came home from each meeting with a headache from the stress I experienced in those meetings. They were years ahead of us in their experiences and I could not relate to the things they were dealing with, but it frightened me that I might someday be able to. So, at that point, I determined that our lives were not going to revolve around V's disability. We were going to have lives that were as normal as possible, and I would do what I needed to do, but not immerse myself in the subject of what was wrong or missing in our lives. That was how I functioned without becoming overwhelmed by how different our lives were becoming from that of my friends. It was lonely and isolating being the only person I knew who was dealing with our particular kinds of troubles. As a single mother, I had no partner to share the ups and downs with. When V was very little, she was included in birthday parties that my friends with normal children held, but as she grew the invitations stopped coming. There were no invitations to come play and no little friends coming over to play with V, just the two of us at home. The children of my friends had grown and moved on to socialize with other children at their own developmental level. V was left behind, and me along with her. I continued to get together with other adults on my own when V spent the weekend with her dad, or I had a sitter, but the strong chance that V would have a meltdown and become aggressive or destructive, kept her from being part of those activities. Peers, outside of school, were non-existent. I could not imagine what it would be like to grow up without friends the way that she had to. I have always recognized that no matter how hard it has been for me to care for her at times, it has always been harder to live in her head 24/7/365. At least I got breaks to live a normal life, to escape stress and frustration. There have been times I have thought that if I had a chance to trade places with her, to give her a chance to live in a body that works as it should while I exist in the one that she has to, I would gladly make that trade so that she could have a chance to have friends, boyfriends, an education, a husband, children, a job, grandchildren, travel, sports....everything she has to miss out on because her body won't do what it was supposed to. I have stared into her eyes, looking for the loving, intelligent soul that I believe is trapped inside and I have wondered if we will finally get to have a real conversation when we get to heaven. I hope so. It would be tragic to never have that chance. I love her and I get to say it every day. She loves me, but never gets to tell me so, so she gives me smiles, hugs and kisses instead.
I try to keep an emotional distance from what we have both lost so that I can hold myself together enough to act on her behalf. If I talk about it too much, my throat gets tight and my body trembles like I am cold and need a sweater.
I try to be okay with the life that V has, but that doesn't mean that I don't miss what it should have been. I should have been sitting at her high school and college graduation while she walked proudly across the stage for her diploma (not certificate), and I should have been taking her prom and homecoming pictures after helping her shop for a dress. I should have congratulated her on her first job and I should be looking forward to her wedding and her children. It's not fair and we have both been robbed of what should have been.
So, if you read my posts and think that you are alone feeling sad, isolated, angry, helpless or frustrated, you are not alone at all. I choose to focus on those things that I can control to maintain my own mental health and to be the best mom I can be, and I look away from all those negative feelings most of the time. But only MOST of the time.
Fitness For Health
In Rockville, Maryland, there is a fitness center unlike any I have seen or heard of. This is a place that has staff who have experience working with the special needs population and have worked collaboratively with special education teachers and occupational therapists.
Nyle, V's OT, and I visited this place today, to determine if it would be an appropriate place to work on her gross motor skills, balance, posture and motor planning. They are equipped to do these things and much more. Marc Sickel, founder of Fitness for Health, showed us around and discussed the philosophy of the program. Nyle thought it was the most state-of-the-art facility that she had seen, and better equipped than any occupational therapy clinic.
An article by Jessica Clancy that is included in the client packet we were given says this place is "customizing programs for kids who are all over the spectrum when it comes to motor skills and cognitive development." She goes on to say that clients with ADD, autism, and an array of genetic disorders have been helped here. Non-disabled clients are served here as well because the facility and staff make fitness and learning fun. Some of these kids participate in "learning through movement" to address academic skills as part of a fitness/play activity.
We will take V to see this facility in the next week or two and see how she responds to the environment and the instructor.
It is a very impressive place.
To read more about this and watch news video clips showing the facility, visit the website at FitnessforHealth.org
Nyle, V's OT, and I visited this place today, to determine if it would be an appropriate place to work on her gross motor skills, balance, posture and motor planning. They are equipped to do these things and much more. Marc Sickel, founder of Fitness for Health, showed us around and discussed the philosophy of the program. Nyle thought it was the most state-of-the-art facility that she had seen, and better equipped than any occupational therapy clinic.
An article by Jessica Clancy that is included in the client packet we were given says this place is "customizing programs for kids who are all over the spectrum when it comes to motor skills and cognitive development." She goes on to say that clients with ADD, autism, and an array of genetic disorders have been helped here. Non-disabled clients are served here as well because the facility and staff make fitness and learning fun. Some of these kids participate in "learning through movement" to address academic skills as part of a fitness/play activity.
We will take V to see this facility in the next week or two and see how she responds to the environment and the instructor.
It is a very impressive place.
To read more about this and watch news video clips showing the facility, visit the website at FitnessforHealth.org
Keeping Up With Research
One of the ways that I keep myself informed about what is going on in the medical research that could someday help V, is through Google Alerts. Every day I get a Google Alert email that summarizes every article that mentions research related to ASD's. Today, one of the articles looks promising. I will look into it further. I have copied the text and will paste it here:
Public release date: 8-Apr-2010
[ Print | E-mail | Share Share ] [ Close Window ]
Contact: Cody Mooneyhan
301-634-7104
Federation of American Societies for Experimental Biology
New study of autism reveals a 'DNA tag' (methylation) amenable to treatment
Research in the FASEB Journal describes discrete epigenetic changes of DNA in a certain subgroup of twins and siblings with autism
A new discovery raises hope that autism may be more easily diagnosed and that its effects may be more reversible than previously thought. In a new study appearing online in The FASEB Journal (http://www.fasebj.org), scientists have identified a way to detect the disorder using blood and have discovered that drugs which affect the methylation state ("DNA tagging") of genes could reverse autism's effects. This type of drug is already being used in some cancer treatments.
"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope that our studies as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals," said Valerie W. Hu, Ph.D., one of the researchers involved in the work from the Department of Biochemistry and Molecular Biology at The George Washington University Medical Center in Washington, D.C. "Since autism is very diverse in the array of symptoms present in any given individual, it is first necessary to be able to identify specific deficits in each individual in order to design and then prescribe the best treatment. As an example of this personalized approach to medicine, we identified RORA as one of the genes that was altered specifically in the sub group of autistic individuals who exhibited severe language deficits."
To make their discovery, Hu and colleagues identified chemical changes in DNA taken from cells of identical twins and sibling pairs, in which only one of the twins or siblings was diagnosed with autism. The researchers then compared genes that showed changes in DNA tagging (methylation) with a list of genes that showed different levels of expression from these same individuals. Then the scientists studied the amount of protein product produced by two genes that appear on both lists in autistic and control regions of the cerebellum and frontal cortex of the brain. They found that both proteins, as predicted by the observed increase in DNA tagging, were reduced in the autistic brain. This suggests that blocking the chemical tagging of these genes may reverse symptoms of the disorder and demonstrates the feasibility of using more easily accessible cells from blood (or other non-brain tissues) for diagnostic screening.
"For far too long, autism research has been side-tracked by the cranky notion that it's caused by the MMR vaccine," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "Studies like this, which define genetic and epigenetic changes in discrete subgroups of the autism spectrum, offer real hope that effective treatments and accurate diagnosis are closer at hand."
###
Receive monthly highlights from The FASEB Journal by e-mail. Sign up at http://www.faseb.org/fjupdate.aspx. The FASEB Journal (http://www.fasebj.org) is published by the Federation of the American Societies for Experimental Biology (FASEB). The journal has been recognized by the Special Libraries Association as one of the top 100 most influential biomedical journals of the past century and is the most cited biology journal worldwide according to the Institute for Scientific Information.
FASEB comprises 23 societies with more than 90,000 members, making it the largest coalition of biomedical research associations in the United States. FASEB enhances the ability of scientists and engineers to improve—through their research—the health, well-being and productivity of all people. FASEB's mission is to advance health and welfare by promoting progress and education in biological and biomedical sciences through service to our member societies and collaborative advocacy.
Details: AnhThu Nguyen, Tibor A. Rauch, Gerd P. Pfeifer, and Valerie W. Hu. Global methylation profiling of lymphoblastoid cell lines reveals epigenetic contributions to autism spectrum disorders and a novel autism candidate gene, RORA, whose protein product is reduced in autistic brain. FASEB J. doi:10.1096/fj.10-154484 ; http://www.fasebj.org/cgi/content/abstract/fj.10-154484v1 "
So, this is just one of the 5 or more articles that come to me in an email alert each day. There are lots of studies that are being conducted every day and it makes me hopeful that at least one of these will yield some results that will help my daughter. It takes time to keep up by reading these articles each day, but don't depend on your doctors to keep up with all that is going on in research. Even the therapists that work with V, wonderful as they are, tell me that they should keep up with the latest research but aren't able to because their lives are so busy. The advantage of reading up on this yourself is that you can bring the interesting issues to the attention of those who treat you or your child or your client and see if they can find out more about it.
Public release date: 8-Apr-2010
[ Print | E-mail | Share Share ] [ Close Window ]
Contact: Cody Mooneyhan
301-634-7104
Federation of American Societies for Experimental Biology
New study of autism reveals a 'DNA tag' (methylation) amenable to treatment
Research in the FASEB Journal describes discrete epigenetic changes of DNA in a certain subgroup of twins and siblings with autism
A new discovery raises hope that autism may be more easily diagnosed and that its effects may be more reversible than previously thought. In a new study appearing online in The FASEB Journal (http://www.fasebj.org), scientists have identified a way to detect the disorder using blood and have discovered that drugs which affect the methylation state ("DNA tagging") of genes could reverse autism's effects. This type of drug is already being used in some cancer treatments.
"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope that our studies as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals," said Valerie W. Hu, Ph.D., one of the researchers involved in the work from the Department of Biochemistry and Molecular Biology at The George Washington University Medical Center in Washington, D.C. "Since autism is very diverse in the array of symptoms present in any given individual, it is first necessary to be able to identify specific deficits in each individual in order to design and then prescribe the best treatment. As an example of this personalized approach to medicine, we identified RORA as one of the genes that was altered specifically in the sub group of autistic individuals who exhibited severe language deficits."
To make their discovery, Hu and colleagues identified chemical changes in DNA taken from cells of identical twins and sibling pairs, in which only one of the twins or siblings was diagnosed with autism. The researchers then compared genes that showed changes in DNA tagging (methylation) with a list of genes that showed different levels of expression from these same individuals. Then the scientists studied the amount of protein product produced by two genes that appear on both lists in autistic and control regions of the cerebellum and frontal cortex of the brain. They found that both proteins, as predicted by the observed increase in DNA tagging, were reduced in the autistic brain. This suggests that blocking the chemical tagging of these genes may reverse symptoms of the disorder and demonstrates the feasibility of using more easily accessible cells from blood (or other non-brain tissues) for diagnostic screening.
"For far too long, autism research has been side-tracked by the cranky notion that it's caused by the MMR vaccine," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "Studies like this, which define genetic and epigenetic changes in discrete subgroups of the autism spectrum, offer real hope that effective treatments and accurate diagnosis are closer at hand."
###
Receive monthly highlights from The FASEB Journal by e-mail. Sign up at http://www.faseb.org/fjupdate.aspx. The FASEB Journal (http://www.fasebj.org) is published by the Federation of the American Societies for Experimental Biology (FASEB). The journal has been recognized by the Special Libraries Association as one of the top 100 most influential biomedical journals of the past century and is the most cited biology journal worldwide according to the Institute for Scientific Information.
FASEB comprises 23 societies with more than 90,000 members, making it the largest coalition of biomedical research associations in the United States. FASEB enhances the ability of scientists and engineers to improve—through their research—the health, well-being and productivity of all people. FASEB's mission is to advance health and welfare by promoting progress and education in biological and biomedical sciences through service to our member societies and collaborative advocacy.
Details: AnhThu Nguyen, Tibor A. Rauch, Gerd P. Pfeifer, and Valerie W. Hu. Global methylation profiling of lymphoblastoid cell lines reveals epigenetic contributions to autism spectrum disorders and a novel autism candidate gene, RORA, whose protein product is reduced in autistic brain. FASEB J. doi:10.1096/fj.10-154484 ; http://www.fasebj.org/cgi/content/abstract/fj.10-154484v1 "
So, this is just one of the 5 or more articles that come to me in an email alert each day. There are lots of studies that are being conducted every day and it makes me hopeful that at least one of these will yield some results that will help my daughter. It takes time to keep up by reading these articles each day, but don't depend on your doctors to keep up with all that is going on in research. Even the therapists that work with V, wonderful as they are, tell me that they should keep up with the latest research but aren't able to because their lives are so busy. The advantage of reading up on this yourself is that you can bring the interesting issues to the attention of those who treat you or your child or your client and see if they can find out more about it.
Friday, April 2, 2010
For Autism Awareness Week
This week there is a lot of media focus on the topic of Autism. It is a good time to learn about more resources out there than you may have known about before.
For Wrightslaw Yellow Pages for kids with disabilities, copy and paste this URL :
http://www.yellowpagesforkids.com
They list advertised services, state by state, so this can help you find the service you are looking for, where ever you are in the United States.
If you have (or are) a teen or young adult with an ASD, and work is a concern, copy and paste this URL:
http://www.jobs4autism.com
This website has the input of people on the autism spectrum who have found jobs and what their experiences have been. Some parents post as well.
Have you ever wondered if you (or your child) would benefit from a service dog? Well, there is a story about a family with an autistic child that had an elopement problem, who was helped. To read about it, copy and paste this URL:
http://www.cnn.com/2010/HEALTH/04/02/autism.service.dogs/index.html?hpt=Sbin
While our dog is not a "service dog", we did get her as a puppy with the thought that she could help us to provide a companion to V, who was not an authority figure and who could comfort her at night if she woke up and felt lonely. She has performed those jobs well, and does not react to sudden or loud movements by V since she was introduced to her at a very young age.
For Wrightslaw Yellow Pages for kids with disabilities, copy and paste this URL :
http://www.yellowpagesforkids.com
They list advertised services, state by state, so this can help you find the service you are looking for, where ever you are in the United States.
If you have (or are) a teen or young adult with an ASD, and work is a concern, copy and paste this URL:
http://www.jobs4autism.com
This website has the input of people on the autism spectrum who have found jobs and what their experiences have been. Some parents post as well.
Have you ever wondered if you (or your child) would benefit from a service dog? Well, there is a story about a family with an autistic child that had an elopement problem, who was helped. To read about it, copy and paste this URL:
http://www.cnn.com/2010/HEALTH/04/02/autism.service.dogs/index.html?hpt=Sbin
While our dog is not a "service dog", we did get her as a puppy with the thought that she could help us to provide a companion to V, who was not an authority figure and who could comfort her at night if she woke up and felt lonely. She has performed those jobs well, and does not react to sudden or loud movements by V since she was introduced to her at a very young age.
Sunday, March 28, 2010
Deciding on the Best Way to Allocate Funds
Twice a year I have to think hard about this issue. Once, as the deadline approaches for the final budget modification, which must be submitted to DDA by the end of the 3rd quarter of the fiscal year, which is the end of March. The second time is when the annual update to the plan of care and budget has to be written.
I review how much of the budget has been spent for each item in the plan and how each of the items in the plan are benefiting V overall, compared the the time spent and the cost.
This year I am struggling with the issue of communication needs vs. physical needs. V is really making excellent progress with the speech therapy, which she receives one hour a week, and recently twice a week. The allocations for expenditures to meet her physical needs are not working out as well. The therapeutic riding lessons keep getting canceled because of various issues, and she is not receiving the benefit of nearly as many lessons in a year as I anticipated she would. So, I need to re-allocate that money to something else. In addition, the difficulties I have had finding and keeping someone to be an adapted aquatics instructor means that those funds have not been benefiting V either, and I need to get the position filled, or change the plan to re-allocate those funds as well. So, I am trying to decide if I should redirect the money to more speech therapy, since it is working so well, or to try to find another way to meet the need she has for improved balance, posture, and gross motor skills. The DDA restrictions on expenditures related to physical fitness make it more difficult to find alternatives to meet those needs for V. I have to make some decisions, justify those decisions in writing, work the numbers out, and do it soon. I shouldn't feel so much pressure to get it exactly right, as I can always submit a plan or budget modification later if I want to change things. Still, I take my responsibility to get this plan as close to meeting all of V's needs as I can very seriously. I should have a talk with the therapists and get some informed input to help me make my decision.
I review how much of the budget has been spent for each item in the plan and how each of the items in the plan are benefiting V overall, compared the the time spent and the cost.
This year I am struggling with the issue of communication needs vs. physical needs. V is really making excellent progress with the speech therapy, which she receives one hour a week, and recently twice a week. The allocations for expenditures to meet her physical needs are not working out as well. The therapeutic riding lessons keep getting canceled because of various issues, and she is not receiving the benefit of nearly as many lessons in a year as I anticipated she would. So, I need to re-allocate that money to something else. In addition, the difficulties I have had finding and keeping someone to be an adapted aquatics instructor means that those funds have not been benefiting V either, and I need to get the position filled, or change the plan to re-allocate those funds as well. So, I am trying to decide if I should redirect the money to more speech therapy, since it is working so well, or to try to find another way to meet the need she has for improved balance, posture, and gross motor skills. The DDA restrictions on expenditures related to physical fitness make it more difficult to find alternatives to meet those needs for V. I have to make some decisions, justify those decisions in writing, work the numbers out, and do it soon. I shouldn't feel so much pressure to get it exactly right, as I can always submit a plan or budget modification later if I want to change things. Still, I take my responsibility to get this plan as close to meeting all of V's needs as I can very seriously. I should have a talk with the therapists and get some informed input to help me make my decision.
Thursday, March 25, 2010
Services Not Covered Under New Directions
I attended a meeting for Support Brokers earlier this week to be fully informed as we approach the deadline for Annual Plan and Budget Updates for the new fiscal year.
Support Brokers were informed that DDA will be strictly enforcing the rules regarding services and supports that are not typically allowable under New Directions.
Some of the items on that list puzzle me.
Admission cost for staff to attend activities in the community with the disabled individual that they support is on the list. When a disabled individual has a monthly income of less than $700.00 from SSI, and no other source of financial support, it doesn't seem reasonable to expect that they can pay the admission cost for support staff to accompany them to the places that they want or need to go. Yet, without the support staff, V can not go anywhere. The staff transport her, speak for her, guide her and keep her safe. The community would be out of reach for V without the support of her staff. Some places allow support staff to enter for free, while charging admission only for V (which we pay for her). Other places, like the small private zoos that she enjoys walking in, will not allow free admission for support staff, so we buy season passes to keep the cost down, covering the cost for V, but receiving reimbursement for the cost of staff passes.
Included on the list of services not allowed are memberships to fitness centers, personal trainers, and nutritionists. All of these support the health of disabled people in a proactive way and prevent the health problems associated with obesity and inactivity. Cognitive and physical disabilities require specialized guidance to maintain a healthy level of physical activity. We do not use a nutritionist, but have used a fitness center to provide access to a pool year round for adapted aquatics, and V does require someone with certain expertise to support her physical fitness needs. Again, when a disabled individual receives only about $8,000 a year in income from SSI, and their family is already picking up the cost of housing, utilities, clothing, entertainment, medical copays, and food that the income can not possibly cover, how can they afford to pay for these services that support good health. If there are sufficient funds in the budget, why are these kind of supports not allowed?
Staff recruitment is now on the list of items not allowed. Since a Craigslist advertisement is $25.00, and a newspaper ad is $100.00 or more, if support staff are necessary, why could this necessary action to find staff not be covered? Agencies run advertisements in the local Gazette. I have seen the ads. I am sure that they pay for these ads from the state funds that they receive.
Maid service is not covered. I know for a fact that at least some group homes are professionally cleaned. Parents don't typically clean the living space of their adult children, and someone with a severe physical or cognitive impairment can not necessarily be expected to be able to do this for themselves. We have never used this service, but I still don't understand why it would be disallowed.
The last two examples seem to set a different standard for agencies vs those participants in New Directions, unless agencies are using funds that are not received from the state to pay for advertising and cleaning services for their offices and group homes. Do they pay for these things out of private donations? New Directions participants don't have the means to have fund-raising events the way agencies do. Whatever New Directions disallows for participants must come out of the pockets of family members.
To be fair, the list does state that consideration will be given on an individual basis if the service or support is justified as relating to the individual's disability and is habilitative in nature.
Support Brokers were informed that DDA will be strictly enforcing the rules regarding services and supports that are not typically allowable under New Directions.
Some of the items on that list puzzle me.
Admission cost for staff to attend activities in the community with the disabled individual that they support is on the list. When a disabled individual has a monthly income of less than $700.00 from SSI, and no other source of financial support, it doesn't seem reasonable to expect that they can pay the admission cost for support staff to accompany them to the places that they want or need to go. Yet, without the support staff, V can not go anywhere. The staff transport her, speak for her, guide her and keep her safe. The community would be out of reach for V without the support of her staff. Some places allow support staff to enter for free, while charging admission only for V (which we pay for her). Other places, like the small private zoos that she enjoys walking in, will not allow free admission for support staff, so we buy season passes to keep the cost down, covering the cost for V, but receiving reimbursement for the cost of staff passes.
Included on the list of services not allowed are memberships to fitness centers, personal trainers, and nutritionists. All of these support the health of disabled people in a proactive way and prevent the health problems associated with obesity and inactivity. Cognitive and physical disabilities require specialized guidance to maintain a healthy level of physical activity. We do not use a nutritionist, but have used a fitness center to provide access to a pool year round for adapted aquatics, and V does require someone with certain expertise to support her physical fitness needs. Again, when a disabled individual receives only about $8,000 a year in income from SSI, and their family is already picking up the cost of housing, utilities, clothing, entertainment, medical copays, and food that the income can not possibly cover, how can they afford to pay for these services that support good health. If there are sufficient funds in the budget, why are these kind of supports not allowed?
Staff recruitment is now on the list of items not allowed. Since a Craigslist advertisement is $25.00, and a newspaper ad is $100.00 or more, if support staff are necessary, why could this necessary action to find staff not be covered? Agencies run advertisements in the local Gazette. I have seen the ads. I am sure that they pay for these ads from the state funds that they receive.
Maid service is not covered. I know for a fact that at least some group homes are professionally cleaned. Parents don't typically clean the living space of their adult children, and someone with a severe physical or cognitive impairment can not necessarily be expected to be able to do this for themselves. We have never used this service, but I still don't understand why it would be disallowed.
The last two examples seem to set a different standard for agencies vs those participants in New Directions, unless agencies are using funds that are not received from the state to pay for advertising and cleaning services for their offices and group homes. Do they pay for these things out of private donations? New Directions participants don't have the means to have fund-raising events the way agencies do. Whatever New Directions disallows for participants must come out of the pockets of family members.
To be fair, the list does state that consideration will be given on an individual basis if the service or support is justified as relating to the individual's disability and is habilitative in nature.
Tuesday, March 16, 2010
Aromatherapy to Treat Behavioral Issues?
Recently, I came across an article suggesting that certain essential oils may have an impact on certain behavioral issues that are commonly associated with ASD's. This is an excerpt from that article:
" Essential Oils and Autism
Essential oils can be effective in reducing some of the emotional and behavioral aspects of autism. Make essential oils a part of the daily routine to help keep everything balanced, calm and happy. Here are some examples:
* Peppermint essential oil is a neuro-stimulator, and helps with concentration. Use it in an aromatherapy diffuser or on cotton pads around the room.
* Neroli essential oil is known to be a very calming oil and is recommended for obsessive behaviors. Neroli is distilled from the flowers of the bitter orange tree and has a wonder full aroma. It can be added to a cream as a moisturizer, or as a perfume, but having it around will help with the obsessions.
* Roman chamomile essential oil has a calming effect and works well with hypersensitivity and aggression. It is particularly useful with in preventing tantrums and in easing transitions. Use in the bath or shower, inhale on a cotton ball or add to an aromatherapy diffuser.
* Sandalwood essential oil is another oil that can be used for obsessive and aggressive behaviors but it is also known for helping with emotional traumas. Use in an aromatherapy diffuser, bath or shower, or in a massage if tolerated. For people who are tactile defensive, add the essential oil to a cream and suggest they massage it into their own hands.
Read more at Suite101: Aromatherapy and Autism: Using Essential Oils to Reduce Symptoms of Autism http://autism-therapy.suite101.com/article.cfm/aromatherapy-and-autism#ixzz0iM4uSzoJ "
Has anyone tried this strategy and had any success with it? It seems harmless enough to try, and relatively inexpensive. I am thinking of giving it a shot and will write about any outcomes later.
" Essential Oils and Autism
Essential oils can be effective in reducing some of the emotional and behavioral aspects of autism. Make essential oils a part of the daily routine to help keep everything balanced, calm and happy. Here are some examples:
* Peppermint essential oil is a neuro-stimulator, and helps with concentration. Use it in an aromatherapy diffuser or on cotton pads around the room.
* Neroli essential oil is known to be a very calming oil and is recommended for obsessive behaviors. Neroli is distilled from the flowers of the bitter orange tree and has a wonder full aroma. It can be added to a cream as a moisturizer, or as a perfume, but having it around will help with the obsessions.
* Roman chamomile essential oil has a calming effect and works well with hypersensitivity and aggression. It is particularly useful with in preventing tantrums and in easing transitions. Use in the bath or shower, inhale on a cotton ball or add to an aromatherapy diffuser.
* Sandalwood essential oil is another oil that can be used for obsessive and aggressive behaviors but it is also known for helping with emotional traumas. Use in an aromatherapy diffuser, bath or shower, or in a massage if tolerated. For people who are tactile defensive, add the essential oil to a cream and suggest they massage it into their own hands.
Read more at Suite101: Aromatherapy and Autism: Using Essential Oils to Reduce Symptoms of Autism http://autism-therapy.suite101.com/article.cfm/aromatherapy-and-autism#ixzz0iM4uSzoJ "
Has anyone tried this strategy and had any success with it? It seems harmless enough to try, and relatively inexpensive. I am thinking of giving it a shot and will write about any outcomes later.
Saturday, March 6, 2010
No End to Learning
This morning was thrilling. Our speech therapist, Lauren, has been working each week on teaching V to use the Tech Speak voice output device to communicate by touching the pictures symbols on the device. A year ago, V thought the device was a toy and would touch random pictures to hear the words, but did not understand that it represented a way for her to talk. During speech therapy this week, she pressed the picture for "I want" and then the picture for "stickers" to form a complete sentence. Why is this a big deal? It is a big deal because, until now, V only used one word utterances,like a series of clues. She could not put two words together. Okay, it was in a speech therapy session, and that is great, by itself. But then, today, she did it again without prompting when the device was presented to her. So, she is transferring the skill of putting two words together to ask for something she wants as part of her day, instead of in a structured therapy session. For V, this is huge progress toward communicating more like the rest of us. She will be 23 years old next month. I remember, years ago, that professionals were trying to teach her this very same skill, and it didn't take. At that time, and in that situation, she was not receptive.
I look forward to continued progress and acquisition of skills for V over the many years ahead. The end of formal education for disabled individuals is an artificial boundary, just as it is for the rest of us. I believe it is important to continue to address areas of need with therapy after formal schooling ends and to make it part of any adult program. There is no deadline for learning and no point that it is too late to try for progress toward a better quality of life.
I look forward to continued progress and acquisition of skills for V over the many years ahead. The end of formal education for disabled individuals is an artificial boundary, just as it is for the rest of us. I believe it is important to continue to address areas of need with therapy after formal schooling ends and to make it part of any adult program. There is no deadline for learning and no point that it is too late to try for progress toward a better quality of life.
Wednesday, February 24, 2010
Paying your New Directions Support Staff
The recent back-to-back blizzards wreaked havoc with the work schedules of V's support staff, causing everyone to miss work because roads were unsafe and impassable. Fortunately, some of V's support staff had unused paid vacation days that they could request to get paid for the missed time. Some support staff thought that they should be paid for the missed time without using their paid vacation hours.
Well, here is the policy, as I have been informed regarding this matter.
There are no means through New Directions funding to pay any employee for unworked hours except vacation pay, and that is only if it is included in the ND plan.
Support staff wages are paid through Medicaid funding, and to falsify timesheets is a federal offense (Medicaid Fraud).
So, when you develop a plan of care and you want employees to be part of the plan, you can not offer sick leave. It is not allowed. You can not offer Administrative leave. There is no way to pay for snow days, other than paid vacation that has already been added to the budget and POC prior to the event.
If V's support staff miss time, I will allow them to trade shifts with another staff so that they can make up the lost income and I will offer them additional hours at a time when no other staffing is in place. I can not write on a time sheet that they were here if they were not.
Bonuses are allowed to be built into the POC/Budget, and I use these in place of health insurance, since some of my staff have insurance through their spouse. This way, there is a means to pay for private health insurance for those who need it, without paying for it for the staff who don't need it.
Well, here is the policy, as I have been informed regarding this matter.
There are no means through New Directions funding to pay any employee for unworked hours except vacation pay, and that is only if it is included in the ND plan.
Support staff wages are paid through Medicaid funding, and to falsify timesheets is a federal offense (Medicaid Fraud).
So, when you develop a plan of care and you want employees to be part of the plan, you can not offer sick leave. It is not allowed. You can not offer Administrative leave. There is no way to pay for snow days, other than paid vacation that has already been added to the budget and POC prior to the event.
If V's support staff miss time, I will allow them to trade shifts with another staff so that they can make up the lost income and I will offer them additional hours at a time when no other staffing is in place. I can not write on a time sheet that they were here if they were not.
Bonuses are allowed to be built into the POC/Budget, and I use these in place of health insurance, since some of my staff have insurance through their spouse. This way, there is a means to pay for private health insurance for those who need it, without paying for it for the staff who don't need it.
Monday, February 22, 2010
Be Part of the Research on ASD
As I was researching solutions to sleep disturbance issues for my last post, I came across the IAN website. I have copied the description of IAN.org from the website for your information and have pasted it below:
"
IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN's goal is to facilitate research that will lead to advancements in understanding and treating autism spectrum disorders (ASDs). To accomplish this goal, we created the IAN Community and IAN Research.
IAN Community
The IAN Community is an online environment designed to act as an inviting library and meeting place where everyone concerned with autism spectrum disorders can learn more about autism research. Everyone can participate and benefit from the IAN Community.
Our goal is to help you:
* Understand the research process
* Keep up with the latest research findings, news, and events
* Understand the value of participating in autism research
* Influence the direction of research "
There. If I would summarize what I have found on the website: It provides descriptions of research studies that are currently being conducted throughout the country, that are still recruiting participants. It publishes the results of completed studies. It allows users to participate in online surveys about autism or ASD's. There is a wealth of information here and an opportunity to be counted in the research if you want to be. I think it is worth checking out and I have registered for it. I have learned from reading research results on IAN that my daughter is typical of girls with ASD's in that 1. she was diagnosed before 12 mos of age, 2. She has cognitive impairment, and 3. She has a seizure disorder. I did not know that these features are far more prevalent in girls that have an ASD diagnosis than in boys. So, I learned something.
I also learned that Vanderbilt is doing a study on sleep disturbance in people with ASD's, and you can read about it or email the researcher with questions from the report on the IAN website.
To visit the IAN website, copy and paste this URL:
http://www.iancommunity.org
"
IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN's goal is to facilitate research that will lead to advancements in understanding and treating autism spectrum disorders (ASDs). To accomplish this goal, we created the IAN Community and IAN Research.
IAN Community
The IAN Community is an online environment designed to act as an inviting library and meeting place where everyone concerned with autism spectrum disorders can learn more about autism research. Everyone can participate and benefit from the IAN Community.
Our goal is to help you:
* Understand the research process
* Keep up with the latest research findings, news, and events
* Understand the value of participating in autism research
* Influence the direction of research "
There. If I would summarize what I have found on the website: It provides descriptions of research studies that are currently being conducted throughout the country, that are still recruiting participants. It publishes the results of completed studies. It allows users to participate in online surveys about autism or ASD's. There is a wealth of information here and an opportunity to be counted in the research if you want to be. I think it is worth checking out and I have registered for it. I have learned from reading research results on IAN that my daughter is typical of girls with ASD's in that 1. she was diagnosed before 12 mos of age, 2. She has cognitive impairment, and 3. She has a seizure disorder. I did not know that these features are far more prevalent in girls that have an ASD diagnosis than in boys. So, I learned something.
I also learned that Vanderbilt is doing a study on sleep disturbance in people with ASD's, and you can read about it or email the researcher with questions from the report on the IAN website.
To visit the IAN website, copy and paste this URL:
http://www.iancommunity.org
Saturday, February 20, 2010
Sleepless Nights
I wonder if there is a parent who has a child with an ASD who has not lost sleep at night because of the irregular sleep patterns of their child. I have certainly been through the problem and know of several other families who still struggle with sleepless nights. If you do an internet search for "regulating sleep in autistic children" you will find many links with lots of suggestions that may or may not solve your problem. One link suggests that giving melatonin to the individual with sleep problems might help. To read more about that copy and paste this url: http://sleepeducation.blogspot.com/2009/04/melatonin-improves-sleep-problems-in.html
As of June 2008, Baylor College of Medicine began conducting a clinical trial on this very problem. I have not found posted results and I do not know if the study has concluded yet. It may provide some answers. To read about it copy and paste this url: http://clinicaltrials.gov/ct2/show/NCT00691080
Someone who was clearly desperate for a good night's sleep has even invented a bed to safely contain someone who cannot be awake and unsupervised safely at night. More information about this is found at http://noahsworldllc.com/
Another site I found suggests using a weighted blanket or white noise. To read this article, copy and paste this url: http://autismaspergerssyndrome.suite101.com/article.cfm/autism_and_sleep_disorders
That same article talks about doing heavy work activities to help improve sleep, and provides a link to an explanation of what "Heavy Work Activities" are.
There are many ideas available that I never knew about or tried. I would be interested in feedback from anyone who tries any of these about the effectiveness.
Any shared stories of success might help another family, so please post comments about any solutions that you have found to this problem.
When I had this problem, we turned the doorknob around so that the lock faced the hall instead of the bedroom, and locked the door at night. For two years, V would knock on the door every 2 hours throughout the night, as a result of a medication change. We tried room darkening shades and the doctor recommendation of benadryl at bedtime, without success. Our behavior analyst suggested that we extinguish the behavior by ignoring the knocking instead of getting up to put V back to bed. She suggested moving V's bed to a location of the house that would make it easier to do this. We moved V's bed to her playroom in the basement and set up a baby monitor to listen for any trouble at night. Unless she was distressed, we ignored the knocking. We turned off the fuse providing power to her lights so that she could not brighten the room when she got up. The result was that she would go back to bed when no one responded and the knocking became less and less frequent until finally she was sleeping through the night again, and so were we. She likes having her bed in her playroom, where she can curl up and take a nap after her community outings if she is tired. The solution was successful and lasting for us.
As of June 2008, Baylor College of Medicine began conducting a clinical trial on this very problem. I have not found posted results and I do not know if the study has concluded yet. It may provide some answers. To read about it copy and paste this url: http://clinicaltrials.gov/ct2/show/NCT00691080
Someone who was clearly desperate for a good night's sleep has even invented a bed to safely contain someone who cannot be awake and unsupervised safely at night. More information about this is found at http://noahsworldllc.com/
Another site I found suggests using a weighted blanket or white noise. To read this article, copy and paste this url: http://autismaspergerssyndrome.suite101.com/article.cfm/autism_and_sleep_disorders
That same article talks about doing heavy work activities to help improve sleep, and provides a link to an explanation of what "Heavy Work Activities" are.
There are many ideas available that I never knew about or tried. I would be interested in feedback from anyone who tries any of these about the effectiveness.
Any shared stories of success might help another family, so please post comments about any solutions that you have found to this problem.
When I had this problem, we turned the doorknob around so that the lock faced the hall instead of the bedroom, and locked the door at night. For two years, V would knock on the door every 2 hours throughout the night, as a result of a medication change. We tried room darkening shades and the doctor recommendation of benadryl at bedtime, without success. Our behavior analyst suggested that we extinguish the behavior by ignoring the knocking instead of getting up to put V back to bed. She suggested moving V's bed to a location of the house that would make it easier to do this. We moved V's bed to her playroom in the basement and set up a baby monitor to listen for any trouble at night. Unless she was distressed, we ignored the knocking. We turned off the fuse providing power to her lights so that she could not brighten the room when she got up. The result was that she would go back to bed when no one responded and the knocking became less and less frequent until finally she was sleeping through the night again, and so were we. She likes having her bed in her playroom, where she can curl up and take a nap after her community outings if she is tired. The solution was successful and lasting for us.
Friday, February 19, 2010
On a Roll!
Six weeks ago I was wondering how the introduction of two new additions to the support team would be received by V, especially when it meant that she would have to give up leisure activities 3 nights in a row to work. Everyone wondered if she would be able to handle the adjustment to her schedule and to 2 new people all at once. Well, all of the hard work by our speech therapist over many months to make that hour of work once a week a positive experience for V laid the groundwork for a successful start with other specialists. We decided that we would keep the time of day for these sessions consistent and I think that helped. The focus on establishing a good rapport before making demands has helped. The result is success on an unexpected level. V has been receptive and cooperative with the new specialists, responding to them in the same way that she has learned to respond to our speech therapist. Not only that, the level of work she is doing with the speech therapist is accelerating since the addition of the new team members and she continues to surprise her team with what she can do. I feel so proud of her and her team, and so encouraged and hopeful about the progress that lies ahead.
The funny thing is, V is like me, in that the less demanded or expected of us by someone - the more we want to do. I guess we are both a bit contrary. The more we have given V respect for her wishes and feelings, the more she is praised for what she does, the more pressure that is removed from the situation, the better the performance we receive from her, happily and willingly.
I think there is a lesson here. She can't speak her feelings, type them or sign them, and there are many things she can't do for herself or understand about the world, but she has her opinions and feelings. She wants the opinions and feelings to be respected, just like the rest of us, in spite of her limitations. The more we honor small signals that she has had enough, needs a break, or feels frustrated, the less she needs to escalate to a physical response to get her point across. She is unlearning the need to fight for control over her life. We are un-learning the habit of forcing our will upon her. To impose a rigid schedule upon this person is to declare war upon her free will, and her response is to fight back. To control her would be to break her spirit and it hasn't been done yet, but is it something that we ever should have desired? Safety and health require some constraints upon the free choice we want to offer, but not that much of the time.
Exposure to the world she lives in, seven days a week, over 18 months, has increased V's tolerance for stimulating environments and has given her the opportunity to practice appropriate behavior in public situations to the point that she is appropriate most days in most situations. This is an ongoing process. Much less control in these public situations is necessary now than when we started taking her out every day.
The better she does, the less we attempt to control her, and the less we try to control her, the better she does.
I can't wait to see where we are a year from now with all the supports that are in place and the active role that V is taking in her own growth.
The funny thing is, V is like me, in that the less demanded or expected of us by someone - the more we want to do. I guess we are both a bit contrary. The more we have given V respect for her wishes and feelings, the more she is praised for what she does, the more pressure that is removed from the situation, the better the performance we receive from her, happily and willingly.
I think there is a lesson here. She can't speak her feelings, type them or sign them, and there are many things she can't do for herself or understand about the world, but she has her opinions and feelings. She wants the opinions and feelings to be respected, just like the rest of us, in spite of her limitations. The more we honor small signals that she has had enough, needs a break, or feels frustrated, the less she needs to escalate to a physical response to get her point across. She is unlearning the need to fight for control over her life. We are un-learning the habit of forcing our will upon her. To impose a rigid schedule upon this person is to declare war upon her free will, and her response is to fight back. To control her would be to break her spirit and it hasn't been done yet, but is it something that we ever should have desired? Safety and health require some constraints upon the free choice we want to offer, but not that much of the time.
Exposure to the world she lives in, seven days a week, over 18 months, has increased V's tolerance for stimulating environments and has given her the opportunity to practice appropriate behavior in public situations to the point that she is appropriate most days in most situations. This is an ongoing process. Much less control in these public situations is necessary now than when we started taking her out every day.
The better she does, the less we attempt to control her, and the less we try to control her, the better she does.
I can't wait to see where we are a year from now with all the supports that are in place and the active role that V is taking in her own growth.
Thursday, January 28, 2010
Resources By State
I just added a link to State by State Resources from Autism Speaks. I can't personally vouch for any of the service providers, and it is not a comprehensive list. V uses dentists, doctors and specialists that are not on the list. My friend uses a music therapist that is not on the list.
There was already a link to a list of resources provided by Autism Pathfinders, but each link offers different resources. If you don't find what you need in one list, check the other. I wish there was one comprehensive list, but I have not found that yet. An individual does not have to be autistic to benefit from these community resources, so whatever the disability, if you need support services, a doctor, or a specialist, check the lists.
If anyone has found a resource in the community that they would like to make others aware of, please post the information in a comment, and I will add a post to make others aware.
There was already a link to a list of resources provided by Autism Pathfinders, but each link offers different resources. If you don't find what you need in one list, check the other. I wish there was one comprehensive list, but I have not found that yet. An individual does not have to be autistic to benefit from these community resources, so whatever the disability, if you need support services, a doctor, or a specialist, check the lists.
If anyone has found a resource in the community that they would like to make others aware of, please post the information in a comment, and I will add a post to make others aware.
Wednesday, January 20, 2010
Solving a Bath Time Problem
For years, bath time has been problematic. First, the transition into the bathroom to take a bath was tricky. If V is involved in an enjoyable activity, she doesn't want to stop to go take a bath. So, first, a natural break in the activity at hand needs to occur to increase the chance of a smooth transition. If she is watching t.v., it can be the end of a show. If she is coloring, it can be the point that she puts down the crayons. Second, she becomes obsessed with running the water, as hot as it will go, far beyond the point that you would want to send water pouring down the drain to avoid a spill over onto the floor, and so hot that her skin turns bright red. What is a painful temperature to me, is not painful to her. This obsession with flowing hot water has led to many a conflict in the tub. V turns the faucet all the way to the hottest level, and I (or the caregiver) turn it back to a cooler temperature or I turn it off because the tub is full and the bath is over. Then, V turns it back on, again, as hot as it will go. Back and forth it goes, until she becomes frustrated and agitated, yelling and splashing water onto the floor and whoever is present. This is not fun for anyone. When the obsession begins, no cajoling, prompting, or demanding that the water stay off will stop it. No tempting treats will consistently overwhelm the desire for the flowing hot water. No behavior management strategy has worked to solve this dilemma. So, we have resorted to a home modification solution.
A panel has been installed in the wall of the bathroom used by V, that allows a caregiver to shut off the hot or cold water supply to the tub, or both hot and cold, by turning a valve. It can not be reached from inside the tub. For the first time in years, we don't have to go shut the hot water off at the hot water heater on the other side of the house. There is no need to leave V alone in the bathroom to interrupt the hot water flow. Now, only the water flow to the tub is interrupted, instead of shutting off the hot water supply to the whole house and interfering with the dishwasher or laundry as before. We used the new system last night for the first time. The caregiver said, "It's the best thing since sliced bread!"
I am thrilled to have a solution to this previously unsolvable problem. I am posting a photo of this panel for anyone who shares this problem. For additional information about how to to this, contact me and I will put you in touch with the gentleman who did the work. Anyone with plumbing experience could do this.
A panel has been installed in the wall of the bathroom used by V, that allows a caregiver to shut off the hot or cold water supply to the tub, or both hot and cold, by turning a valve. It can not be reached from inside the tub. For the first time in years, we don't have to go shut the hot water off at the hot water heater on the other side of the house. There is no need to leave V alone in the bathroom to interrupt the hot water flow. Now, only the water flow to the tub is interrupted, instead of shutting off the hot water supply to the whole house and interfering with the dishwasher or laundry as before. We used the new system last night for the first time. The caregiver said, "It's the best thing since sliced bread!"
I am thrilled to have a solution to this previously unsolvable problem. I am posting a photo of this panel for anyone who shares this problem. For additional information about how to to this, contact me and I will put you in touch with the gentleman who did the work. Anyone with plumbing experience could do this.
Tuesday, January 19, 2010
The Tme of the Day Makes a Difference
I have observed an interesting pattern in V's services. If the speech therapist comes at 10:00 a.m. for a session, not much work gets done, but if she comes at 4:00 p.m., she can get a solid hour of work from V. When the occupational therapist came for a visit the very first time, over a year ago, at 10:00 am, V had the biggest tantrum I had seen in years. Yet, when the same OT came for 2 visits recently at 5:00 p.m., she was received peacefully and with cooperation and interest.
Now, I have specialist services scheduled at 4 or 5 in the afternoon on Monday, Tuesday, and Wednesday because I can see that V is not receptive to doing work in the morning, but is interested and willing to participate later in the day. It makes me look back and wonder if this is not part of the problem that we had with resistance to school activities. I now see that she is at her best when the school day would have been over.
It is an observation that has some interesting implications for service delivery, and worth looking at as we continue to schedule activities.
As you plan a program of services, remain flexible in your scheduling. If it doesn't work at one time of the day, try another time and see if that makes a difference.
Now, I have specialist services scheduled at 4 or 5 in the afternoon on Monday, Tuesday, and Wednesday because I can see that V is not receptive to doing work in the morning, but is interested and willing to participate later in the day. It makes me look back and wonder if this is not part of the problem that we had with resistance to school activities. I now see that she is at her best when the school day would have been over.
It is an observation that has some interesting implications for service delivery, and worth looking at as we continue to schedule activities.
As you plan a program of services, remain flexible in your scheduling. If it doesn't work at one time of the day, try another time and see if that makes a difference.
Tuesday, January 12, 2010
Freeze on New Directions Applicants
Rumors were floating among parents I know. I heard that no new applications for New Directions Waiver services are being accepted at this time. I wondered if the New Directions program was at risk. So, I wrote an email to my resource coordinator, Lauretta Reffell, to ask for the scoop.
New Directions is not in danger of going away, she says. This waiver has a limited number of slots and they are all currently full, so no new applications are being accepted at this time. Those families or individuals who are currently served by the Community Pathways model must remain in that situation, even if they are not satisfied with their services, until clients leave New Directions and create openings or until DDA decides to increase the number of slots for the waiver.
Why does New Directions have a limited number of slots? I don't know the answer to that question. It could be that new applications require a lot of support from DDA staff to get the plan of care and budget set up. Many of these documents take months to create and involve many revisions until they are just right. With state budgets so stretched, I am sure that DDA can't hire any additional staff to carry the weight of such time-consuming clients. It could be that the state doesn't want to take too much business away from established agencies that currently provide services to clients with less direct DDA support and hand-holding. I am guessing. If I get an answer to the question from DDA, I will post it.
I would like to see this option expand and be available to anyone who wants it. For that to happen, DDA would need to contract out the supports required to set up the plan of care and budget, and have the applicant pay for the cost from their annual budget, rather than hire permanent DDA employees to support each applicant. That could keep the cost down to the state and the work load down for the DDA staff. What about the loss of clients to established agencies? I hope that at some point, New Directions clients will have the option of purchasing just the services that they want and need from established agencies out of their New Directions budgets, which would be something of a crossover between Community Pathways and New Directions Waivers. So far, I don't know of any established agencies that are open to this kind of arrangement. I asked CSAAC director, Ian Paragol, about this possibility by phone 2 years ago, and he said he would look into it, but never got back to me or responded to letters asking what he was able to find out.
If self direction is what you want, then you will need to let DDA know that you would like to see the number of slots for the New Directions Waiver increased, or it may not be an option when you want it.
If you are not in Maryland and your state does not have anything similar to this, click on the Maryland DDA link and go to New Directions Waiver. Send the program description to your state agency for disability services and ask for this option. Get other individuals and families you know to sign the request. The self directed option is GREAT and everyone should have it if they want it!
New Directions is not in danger of going away, she says. This waiver has a limited number of slots and they are all currently full, so no new applications are being accepted at this time. Those families or individuals who are currently served by the Community Pathways model must remain in that situation, even if they are not satisfied with their services, until clients leave New Directions and create openings or until DDA decides to increase the number of slots for the waiver.
Why does New Directions have a limited number of slots? I don't know the answer to that question. It could be that new applications require a lot of support from DDA staff to get the plan of care and budget set up. Many of these documents take months to create and involve many revisions until they are just right. With state budgets so stretched, I am sure that DDA can't hire any additional staff to carry the weight of such time-consuming clients. It could be that the state doesn't want to take too much business away from established agencies that currently provide services to clients with less direct DDA support and hand-holding. I am guessing. If I get an answer to the question from DDA, I will post it.
I would like to see this option expand and be available to anyone who wants it. For that to happen, DDA would need to contract out the supports required to set up the plan of care and budget, and have the applicant pay for the cost from their annual budget, rather than hire permanent DDA employees to support each applicant. That could keep the cost down to the state and the work load down for the DDA staff. What about the loss of clients to established agencies? I hope that at some point, New Directions clients will have the option of purchasing just the services that they want and need from established agencies out of their New Directions budgets, which would be something of a crossover between Community Pathways and New Directions Waivers. So far, I don't know of any established agencies that are open to this kind of arrangement. I asked CSAAC director, Ian Paragol, about this possibility by phone 2 years ago, and he said he would look into it, but never got back to me or responded to letters asking what he was able to find out.
If self direction is what you want, then you will need to let DDA know that you would like to see the number of slots for the New Directions Waiver increased, or it may not be an option when you want it.
If you are not in Maryland and your state does not have anything similar to this, click on the Maryland DDA link and go to New Directions Waiver. Send the program description to your state agency for disability services and ask for this option. Get other individuals and families you know to sign the request. The self directed option is GREAT and everyone should have it if they want it!
Friday, January 8, 2010
Exciting New Year
V is 1.5 years into her New Directions Waiver services and I have finally been successful in adding an occupational therapist to the support team who has experience with the population of clients with developmental disabilities. Nyle MacFarlane of Blue Nyle Therapy Services is beginning one hour a week with V at our home, for now. She hopes that V can eventually access the clinic where the sensory equipment is available. Transitions, being what they are for V, will make this a future goal, after a positive relationship between V and therapist has been established.
This week we also have a veteran special education teacher joining the support team,who will also visit one hour a week to help V increase her knowledge and skills.
The only piece of our plan lacking is a replacement for the adapted aquatics instructor that we lost in July. I am still working on that, but remain hopeful.
The new staff additions have meant that this has been a busy week for me, with meetings and paperwork, faxes, phone calls and emails. This is standard when there is any change in the team.
I am excited and also anxious. I see possibility for growth for V, but know that it will be an adjustment to have 2 additional days a week to work with 2 new people and I wonder how she will respond. I hope she will like it. She is so lucky to have such qualified supports. She is getting more services now than when she was in school!
As I posted before, it has been really difficult to fill these positions. I first met with Nyle more than a year ago. Her schedule was too packed to fit V in at the time, but every couple of months I shot her an email, touching base, asking if her schedule had any new slots or if she knew anyone who might be qualified and interested in the position. Finally, the answer was yes. For the teacher, I emailed someone who works as an assistant in a nearby special education center and asked if they knew anyone who might be interested in working with V. The response came the same day and that arrangement was confirmed within 2 days.
So, as difficult as it can be to fill positions with good people, over all I have had more success by asking people I know for references than by advertising.
If you need staff, look up your local special education centers, fax or email what you need to the main office, human resources or directly to staff emails that are often listed on the website of the organization. Ask them to post your need on a staff lounge bulletin board or to share it with anyone who might be good in the position. Secretaries and human resource people are often sympathetic and happy to share your request with staff. I found two of my personal support staff in this manner, and they brought on the other staff from people that they knew who have similar qualifications.
This week we also have a veteran special education teacher joining the support team,who will also visit one hour a week to help V increase her knowledge and skills.
The only piece of our plan lacking is a replacement for the adapted aquatics instructor that we lost in July. I am still working on that, but remain hopeful.
The new staff additions have meant that this has been a busy week for me, with meetings and paperwork, faxes, phone calls and emails. This is standard when there is any change in the team.
I am excited and also anxious. I see possibility for growth for V, but know that it will be an adjustment to have 2 additional days a week to work with 2 new people and I wonder how she will respond. I hope she will like it. She is so lucky to have such qualified supports. She is getting more services now than when she was in school!
As I posted before, it has been really difficult to fill these positions. I first met with Nyle more than a year ago. Her schedule was too packed to fit V in at the time, but every couple of months I shot her an email, touching base, asking if her schedule had any new slots or if she knew anyone who might be qualified and interested in the position. Finally, the answer was yes. For the teacher, I emailed someone who works as an assistant in a nearby special education center and asked if they knew anyone who might be interested in working with V. The response came the same day and that arrangement was confirmed within 2 days.
So, as difficult as it can be to fill positions with good people, over all I have had more success by asking people I know for references than by advertising.
If you need staff, look up your local special education centers, fax or email what you need to the main office, human resources or directly to staff emails that are often listed on the website of the organization. Ask them to post your need on a staff lounge bulletin board or to share it with anyone who might be good in the position. Secretaries and human resource people are often sympathetic and happy to share your request with staff. I found two of my personal support staff in this manner, and they brought on the other staff from people that they knew who have similar qualifications.
Tuesday, January 5, 2010
The Winter Doldrums
It is cold outside! The high temps all week will be in the low 30's. V doesn't like these frosty days and neither do her support staff. The zoos that she enjoys so much are closed for the season. The horseback riding lessons get cancelled often because it is too cold or because V does not like riding indoors on rainy days. No one is interested in walking in the parks in the frigid weather.
As I documented mileage for reimbursement, I noticed a lot of trips to the mall for community outings. The mall is a nice warm place to walk and get some exercise and there is certainly a lot to look at and eat there. However, I was thinking that too many trips to the mall between now and the warmer temps of Spring could get stale and boring. Of course we still have the Indoor swim center, the library, the bowling alley, the movie theater and various restaurants, but what else can we do?
We live in the suburbs and there are lots of businesses that can help V learn more about the community that she lives in and how things work. Time to get a little creative.
Where could V go, close to home, where she hasn't been before? Something new and interesting.
I began pulling up online photos of florists. There is one close to our home. I printed out directions to it for support staff. I pulled up photos of floral arrangements for various occasions; birthdays, weddings, funerals, new baby, and get well. I printed them out and cut them up. The next morning I helped the support staff do a gluing activity with V, using the florist pictures, as we talked about what the different flower arrangements were for, and what a florist does. Afterward, I asked V, "Do you want to go see the flowers at the florist?" She responded, "Yeah." So, a while later, off she went with her staff, to the florist. I wondered all day how the outing would go. V came home with an african violet that she purchased at the florist. Her staff reported that she was very interested in the flowers, the posters on the wall, and the ribbons the florist used. It was a successful outing and now V knows what a florist shop is. The staff said that they tried to go to the post office with her, but it was crowded and she got upset there. Well, I suggested that some preparation before visiting a new destination would be helpful next time, the way we prepared for the florist in advance.
I spoke with the staff about other possible community destinations that might be interesting; maybe a bakery, maybe the dry cleaners, the pharmacy, NTW or an automotive supply store, or Krispy Kreme to watch the donuts get made. Perhaps a local dance studio would let her watch a class. Perhaps a visit to see a fire truck could be arranged. There a lots of interesting places in D.C. or Baltimore to visit, but parking close enough to those attractions is a problem in those places.
I think, with some imagination and preparation, we could make this winter interesting instead of routine and introduce some new experiences. As always, ideas are welcome from readers.
As I documented mileage for reimbursement, I noticed a lot of trips to the mall for community outings. The mall is a nice warm place to walk and get some exercise and there is certainly a lot to look at and eat there. However, I was thinking that too many trips to the mall between now and the warmer temps of Spring could get stale and boring. Of course we still have the Indoor swim center, the library, the bowling alley, the movie theater and various restaurants, but what else can we do?
We live in the suburbs and there are lots of businesses that can help V learn more about the community that she lives in and how things work. Time to get a little creative.
Where could V go, close to home, where she hasn't been before? Something new and interesting.
I began pulling up online photos of florists. There is one close to our home. I printed out directions to it for support staff. I pulled up photos of floral arrangements for various occasions; birthdays, weddings, funerals, new baby, and get well. I printed them out and cut them up. The next morning I helped the support staff do a gluing activity with V, using the florist pictures, as we talked about what the different flower arrangements were for, and what a florist does. Afterward, I asked V, "Do you want to go see the flowers at the florist?" She responded, "Yeah." So, a while later, off she went with her staff, to the florist. I wondered all day how the outing would go. V came home with an african violet that she purchased at the florist. Her staff reported that she was very interested in the flowers, the posters on the wall, and the ribbons the florist used. It was a successful outing and now V knows what a florist shop is. The staff said that they tried to go to the post office with her, but it was crowded and she got upset there. Well, I suggested that some preparation before visiting a new destination would be helpful next time, the way we prepared for the florist in advance.
I spoke with the staff about other possible community destinations that might be interesting; maybe a bakery, maybe the dry cleaners, the pharmacy, NTW or an automotive supply store, or Krispy Kreme to watch the donuts get made. Perhaps a local dance studio would let her watch a class. Perhaps a visit to see a fire truck could be arranged. There a lots of interesting places in D.C. or Baltimore to visit, but parking close enough to those attractions is a problem in those places.
I think, with some imagination and preparation, we could make this winter interesting instead of routine and introduce some new experiences. As always, ideas are welcome from readers.
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