CARING FOR MOM
Location: The Grove Banquet Hall (9158 Winton Road)
Free Seminar!
Register by calling 522-1154, or register online
Presented by Micki Fehring, RN, in partnership with West College Hill, North College Hill and Springfield Township Senior Centers
Caring for a parent comes with many challenges. Juggling between your child’s soccer game and your mother’s doctor’s appointments - managing to balance it all. Whether you are one of the 42 million people currently caring for an older adult or are just approaching the years when its time to take care of mom, this seminar will held guide you through resources you will need to make difficult decisions easier. Join us at Springfield Township’s Grove Banquet Hall to learn more about the vast options of care and tour through resources available to caregivers. Geriatric Care Manager, Micki Fehring, RN, will cover information on:
The stress of multi-generational care
Understanding the choices in care
How to pay for in-home care
Safety and independence
You will leave this series with a better understanding of the different types of care available and will be given a take-home resource guide.There will also be a series of follow-up sessions introduced that will focus more on one specific topic.(Dates for follow-up courses will be provided at the seminar)
About the presenter – Micki Fehring has been a registered nurse for over 15 years and is currently a Geriatric Care Manager for Care Advisers by Black Stone. Her role allows her to asses a patient’s needs, present them with the best choices of care and arrange for the care to begin.
Wednesday, May 18 6:00 p.m. – 8:00 p.m. **Light dinner will be provided**
Tuesday, April 12, 2011
Tuesday, March 22, 2011
Mainstreaming or Warehousing?
"Mainstreaming theory in some case exempts the student from learning according to their ability, skill level, and developmental pattern. They will never reach their greatest potential."
I've been reading a lot of articles about mainstreaming. I see a river of difference in mainstreaming theory and mainstreaming reality.
In theory, it works only when there are plenty of available resources, time, and finances. In order for it to work for the individual, mainstreaming is a long-term and ongoing process requiring support for everyone in the community -- from the mayor or city manager on down.
Unfortunately today, mainstreaming reality is still a vision involving coordination from people and organizations most of which exist on the margins of our society in terms of funding and support. In fact most of these organizations that advocate for the rights of people with special needs are not even mainstreamed into our society!
We hope that one day all our children will be mainstreamed into community life and be embraced and accepted for who they are instead of what they aren't. Planting those seeds requires tapping into a education system that is letting go their teacher's aids because the budget cuts at the state level have been severe and steady in Ohio since 1998.
What our government has developed for the schools as "mainstreaming" is a package deal claiming that all kids can be included in the classroom as participants and school related social settings regardless of their disability. In reality, we hope they are, but many are only visible and not included. Their needs are just being "warehoused" until they go home.
Buying into this neatly packaged "mainstream reality" involves developing an IEP (Individualized Education Plan), a 503 plan, or behavior plan. In the IEP, for example, are specific objectives and goals for the child and additional assisting technologies, therapeutic services, and adaptive aids to accommodate the child's needs in the classroom. For some children, an IEP is what separates them from the rest of the class so they can learn according to their "own ability."
For some children who are globally or developmentally delayed, children who process information differently, and children who have have neurological-diverse behaviors emerging, being in the classroom with their biological peers who are on "curriculum track" may be counterproductive or irrelevant. In this case, parents, advocates, and school district representatives should seek out alternative special education environments or services that will match the child's ability. An environment that promotes learning based on the child's ability.
When alternatives are not offered or not available or if school does not support a particular "ALTERNATIVE" service that might greatly enhance a child's special education experience, many times parents and caregivers are forced into accepting the district's school-government "mainstreaming" option. In other cases, parents and caregivers have elected to keep their child at home.
Since I can only go by personal experiences as a mother and by what I have experienced by working in schools, all I can say that most parents and caregivers are absolutely clueless about what goes on in the classroom where the child is presumed to be "mainstreamed. Many parents are clueless because their view of mainstreaming is based on the theory, not the true reality.
Not all children benefit from mainstreaming, but this information is not given to parents during meetings. In some case studies, mainstreaming in the classroom interferes with the child's progress. It might trigger sensory issues as in the case of children diagnosed ASD.
Unfortunately there are no alternatives in some school districts. In other schools, alternatives exist but it is not supported by the school district so most children settle for mainstreaming theory which turned out to be nothing more than babysitting services or "warehousing" a child's needs until the school day is over.
Sure, once in a while the parents are invited to school-related programs where they see their child "included" with the rest of the kids and everybody goes home happy that the child is "mainstreamed" but this is where the mainstreaming begins and ends for many of our children with varying abilities.
For many of the schools offering packaged mainstreaming where children's needs are being warehoused, all I see are kids being pulled in and out of classrooms and in some cases, roaming around the school or left in "a special resources room."
I see kids who are not expected to develop or learn according to their own ability since they are also exempt from most classroom activities, tests, and given alternative assessments. Sure, they have IEPs and 503s and behavior plans, and the paperwork is getting done, but the kids are not getting any benefit from this situation because in this mainstreaming "reality" created by government and districts schools, children are not expected to do anything. Mainstreaming theory exempts some children from learning according to their ability, skill level, and developmental pattern.
Grant it, I have seen many special education environments that can accommodate a diversity of special education needs for many different children but this is not mainstreaming. This is offering separate, equitable, and equal opportunities for the individual child and I see nothing wrong with this alternative.
On eric.ed.gov website, there are annotated bibliographic records for more than 1.2 million articles about special education that have been indexed since 1966, including:
journal articles
books
research syntheses
conference papers
technical reports
policy papers, and
other education-related materials
I encourage each and every caregiver or parent of a child with special needs to read over the current research about the challenges of mainstreaming in the classroom -- specifically learning what "individualized special education" means and how their son or daughter can benefit from it.
Our understanding of mainstreaming has changed over the years. Clearly, "mainstreaming" is not for every child. We cannot build our our entire education system with a "one size fits all" model when it comes to providing special education opportunities for our children.
I've been reading a lot of articles about mainstreaming. I see a river of difference in mainstreaming theory and mainstreaming reality.
In theory, it works only when there are plenty of available resources, time, and finances. In order for it to work for the individual, mainstreaming is a long-term and ongoing process requiring support for everyone in the community -- from the mayor or city manager on down.
Unfortunately today, mainstreaming reality is still a vision involving coordination from people and organizations most of which exist on the margins of our society in terms of funding and support. In fact most of these organizations that advocate for the rights of people with special needs are not even mainstreamed into our society!
We hope that one day all our children will be mainstreamed into community life and be embraced and accepted for who they are instead of what they aren't. Planting those seeds requires tapping into a education system that is letting go their teacher's aids because the budget cuts at the state level have been severe and steady in Ohio since 1998.
What our government has developed for the schools as "mainstreaming" is a package deal claiming that all kids can be included in the classroom as participants and school related social settings regardless of their disability. In reality, we hope they are, but many are only visible and not included. Their needs are just being "warehoused" until they go home.
Buying into this neatly packaged "mainstream reality" involves developing an IEP (Individualized Education Plan), a 503 plan, or behavior plan. In the IEP, for example, are specific objectives and goals for the child and additional assisting technologies, therapeutic services, and adaptive aids to accommodate the child's needs in the classroom. For some children, an IEP is what separates them from the rest of the class so they can learn according to their "own ability."
For some children who are globally or developmentally delayed, children who process information differently, and children who have have neurological-diverse behaviors emerging, being in the classroom with their biological peers who are on "curriculum track" may be counterproductive or irrelevant. In this case, parents, advocates, and school district representatives should seek out alternative special education environments or services that will match the child's ability. An environment that promotes learning based on the child's ability.
When alternatives are not offered or not available or if school does not support a particular "ALTERNATIVE" service that might greatly enhance a child's special education experience, many times parents and caregivers are forced into accepting the district's school-government "mainstreaming" option. In other cases, parents and caregivers have elected to keep their child at home.
Since I can only go by personal experiences as a mother and by what I have experienced by working in schools, all I can say that most parents and caregivers are absolutely clueless about what goes on in the classroom where the child is presumed to be "mainstreamed. Many parents are clueless because their view of mainstreaming is based on the theory, not the true reality.
Not all children benefit from mainstreaming, but this information is not given to parents during meetings. In some case studies, mainstreaming in the classroom interferes with the child's progress. It might trigger sensory issues as in the case of children diagnosed ASD.
Unfortunately there are no alternatives in some school districts. In other schools, alternatives exist but it is not supported by the school district so most children settle for mainstreaming theory which turned out to be nothing more than babysitting services or "warehousing" a child's needs until the school day is over.
Sure, once in a while the parents are invited to school-related programs where they see their child "included" with the rest of the kids and everybody goes home happy that the child is "mainstreamed" but this is where the mainstreaming begins and ends for many of our children with varying abilities.
For many of the schools offering packaged mainstreaming where children's needs are being warehoused, all I see are kids being pulled in and out of classrooms and in some cases, roaming around the school or left in "a special resources room."
I see kids who are not expected to develop or learn according to their own ability since they are also exempt from most classroom activities, tests, and given alternative assessments. Sure, they have IEPs and 503s and behavior plans, and the paperwork is getting done, but the kids are not getting any benefit from this situation because in this mainstreaming "reality" created by government and districts schools, children are not expected to do anything. Mainstreaming theory exempts some children from learning according to their ability, skill level, and developmental pattern.
Grant it, I have seen many special education environments that can accommodate a diversity of special education needs for many different children but this is not mainstreaming. This is offering separate, equitable, and equal opportunities for the individual child and I see nothing wrong with this alternative.
On eric.ed.gov website, there are annotated bibliographic records for more than 1.2 million articles about special education that have been indexed since 1966, including:
journal articles
books
research syntheses
conference papers
technical reports
policy papers, and
other education-related materials
I encourage each and every caregiver or parent of a child with special needs to read over the current research about the challenges of mainstreaming in the classroom -- specifically learning what "individualized special education" means and how their son or daughter can benefit from it.
Our understanding of mainstreaming has changed over the years. Clearly, "mainstreaming" is not for every child. We cannot build our our entire education system with a "one size fits all" model when it comes to providing special education opportunities for our children.
Sunday, March 20, 2011
"The Father Factor"
Bobbie B. Fairfax School is presenting Dr. Robert Naseef this Thursday, March 24th at 7 p.m. until 8:30 or so. Please RSVP Diane Ritter by calling 513-559-6719 or email her at diane.ritter@hamiltondds.org
Friday, March 18, 2011
Volcanic Wheels For Wheelchairs
Just a quick update here for families and friends looking for gift ideas. The volcanic wheels for front wheels draws a lot of attention to Elisabeth. We have a set each on the Metro and her Titelite wheelchair. It also draws in conversations to her directly. People generally ask, "Hey, that's so cool, where did you get those?" We paid around $20.00 for each wheel and $6.00 for shipping. A trip to the hardware store will get you the spacers otherwise the bearing slip out and the magnetic core that triggers the lights to flash will crack & crumble which is what happened to us while on vacation just a short time ago. Fortunately the hotel maintenance crew in Miami were very friendly and found us washers that fit perfectly. The Volcanic Wheels sent us one new magnetic bearing for the one wheel that could not be salvaged.
The grande wheel will fit the front wheel of most wheelchairs. Here's contact info:
DRI Products, Inc. For Orders in US : 1 - 8 - ONLY WHEEL (1-866-599-4335)
1160 N. Central Ave #A209Glendale, CA 91202 USA
General: info@volcanicwheel.comSales: sales@volcanicwheel.comCustomer Service: service@volcanicwheel.com
1160 N. Central Ave #A209Glendale, CA 91202 USA
General: info@volcanicwheel.comSales: sales@volcanicwheel.comCustomer Service: service@volcanicwheel.com
Thursday, March 17, 2011
(Rise Up My Darling!)
Between the radiation fallout, Japan's disasters, and the Danny Hakim's article last Sunday, I wonder if there is any hope for us or is this part of the ebb and flow of a planet spinning.
For any of you participating in that pilgrimage from St. Patrick's Church in Saul, Ireland, to Down Cathedral in Downpatrick, send a little love to Japan.
In the meantime, I'll be filling up on a little Éirigh Suas a Stóirín myself!
Happy St. Paddy's Day ya'll!
For any of you participating in that pilgrimage from St. Patrick's Church in Saul, Ireland, to Down Cathedral in Downpatrick, send a little love to Japan.
In the meantime, I'll be filling up on a little Éirigh Suas a Stóirín myself!
Happy St. Paddy's Day ya'll!
Sunday, March 13, 2011
And Deliver Us From Evil...
This morning in the NYTimes, I wake up to Danny Hakim's story about group homes in New York. I don't know whether to be angry or relieved about what his investigation turned up.
It's "the nightmare" most of us live with and the reason why we hold on to caring for Elisabeth because she is the most vulnerable here.
Instead of crimes like rape being committed against them in institutions tucked away from society, the crimes are being perpetrated right from under our noses, in our own neighborhoods. Maybe it's not where we put them for independent living that is the problem. Maybe it's with whom we put them in regard to "group homes" independent lifestyles.
The issue (unfortunately) will become another political debate about how unions and state funded programs are no longer reliable. The debate will be about how we are wasting our money on government programs instead of looking at ways we can make it safer.
Our voices are never heard and drowned out by politicians who want to wittle away at government funding for our children. The same people who will never be in need of assisted living housing even though we are a nano second from becoming disabled. The same people who will have the financial resources and support to put their loved one's in the best of care. (On the flip side, we figured out that it's cheaper to send Elisabeth on a cruise the rest of her life than it would be for her to live in even the cheapest assisted living home here in Cincinnati.)
Naturally, many people tend to think that privatizing care is the only solution when in reality we just traveled down that road not so long ago in Texas. Remember when we found all those residents living in filth because the housing went unregulated and unsupervised? In fact, privatizing care will only create more inequity in housing options for our family and friends.
Instead, we should be debating the "quality of care" regardless whether it's a private or state funded home. We need to make it easy to get rid of people we suspect are abusing or taking advantage of our family and friends. And we need to do away with this mentality of "out of sight, out of mind." Visiting them once a year? C'mon, we can do better than that! I don't care how busy you are. If we don't show how much we care about our family and friends, why would we expect others to care?
We need to put our money where our mouth is.
When it comes to clothing, toileting, showering our family and friends, there should always be at least one licensed medical professional present to supervise the attendants. Not that the LMP is less likely to do something as horrible as what we read in the article, but that there is at least one person present other than the attendant when tending to the private needs of the residents.
And we have to do a better job treating the attendants and assistants with respect. Maybe we need to be more discretionary in requiring more professional screening and training than what we allow right now. It's a difficult job caring for the adult population of special needs as many parents will tell you.
Maybe the bar isn't high enough in either private or government care. Maybe our expectation isn't high enough. Care for this population is only worth it's weight in gold....
It's "the nightmare" most of us live with and the reason why we hold on to caring for Elisabeth because she is the most vulnerable here.
Instead of crimes like rape being committed against them in institutions tucked away from society, the crimes are being perpetrated right from under our noses, in our own neighborhoods. Maybe it's not where we put them for independent living that is the problem. Maybe it's with whom we put them in regard to "group homes" independent lifestyles.
The issue (unfortunately) will become another political debate about how unions and state funded programs are no longer reliable. The debate will be about how we are wasting our money on government programs instead of looking at ways we can make it safer.
Our voices are never heard and drowned out by politicians who want to wittle away at government funding for our children. The same people who will never be in need of assisted living housing even though we are a nano second from becoming disabled. The same people who will have the financial resources and support to put their loved one's in the best of care. (On the flip side, we figured out that it's cheaper to send Elisabeth on a cruise the rest of her life than it would be for her to live in even the cheapest assisted living home here in Cincinnati.)
Naturally, many people tend to think that privatizing care is the only solution when in reality we just traveled down that road not so long ago in Texas. Remember when we found all those residents living in filth because the housing went unregulated and unsupervised? In fact, privatizing care will only create more inequity in housing options for our family and friends.
Instead, we should be debating the "quality of care" regardless whether it's a private or state funded home. We need to make it easy to get rid of people we suspect are abusing or taking advantage of our family and friends. And we need to do away with this mentality of "out of sight, out of mind." Visiting them once a year? C'mon, we can do better than that! I don't care how busy you are. If we don't show how much we care about our family and friends, why would we expect others to care?
We need to put our money where our mouth is.
When it comes to clothing, toileting, showering our family and friends, there should always be at least one licensed medical professional present to supervise the attendants. Not that the LMP is less likely to do something as horrible as what we read in the article, but that there is at least one person present other than the attendant when tending to the private needs of the residents.
And we have to do a better job treating the attendants and assistants with respect. Maybe we need to be more discretionary in requiring more professional screening and training than what we allow right now. It's a difficult job caring for the adult population of special needs as many parents will tell you.
Maybe the bar isn't high enough in either private or government care. Maybe our expectation isn't high enough. Care for this population is only worth it's weight in gold....
Thursday, March 10, 2011
Wednesday, December 8, 2010
Before you consider IEP (Individualized Education Plan)
All schools are mandated here in Ohio to provide individualized special education plans for children with disabilities. No two plans should be alike because what is appropriate for one child with special needs may not be appropriate for another child with special needs.
First off, parents need to see what the classroom will look like to get an idea how the child will fit in. Is it the kind of environment in which the student will succeed? Is it accessible and does it have room for all the neccessary adaptions? Who will be assisting the student in the classroom? How are the assistive technologies integrated?
Secondly, the one question parent tend to forget is how the school accounts for the time while student is in the classroom. How will the IEP show how the day is structured if the student needs assistance all the time? What about when they are receiving special instruction? Will they be sharing this time with other students who also have IEPs? What if they see regression while implementing the IEP? Will they wait until the next IEP? How long is it before any changes or concerns will be addressed?
The parents should be asking at the IEP meetings what options or alternatives they have if no progress is being made before the next IEP meeting. What changes can the school make without notifying parents? What changes require notifying parents? Or what happens IF the school environment shows it is impeding the individual progress of a student? How will the school district respond?
These are issues that need to be discussed while the IEP is taking shape, before anyone signs off on any paperwork. Once these questions are addressed and noted, then the team can begin developing a plan designed for the student.
First off, parents need to see what the classroom will look like to get an idea how the child will fit in. Is it the kind of environment in which the student will succeed? Is it accessible and does it have room for all the neccessary adaptions? Who will be assisting the student in the classroom? How are the assistive technologies integrated?
Secondly, the one question parent tend to forget is how the school accounts for the time while student is in the classroom. How will the IEP show how the day is structured if the student needs assistance all the time? What about when they are receiving special instruction? Will they be sharing this time with other students who also have IEPs? What if they see regression while implementing the IEP? Will they wait until the next IEP? How long is it before any changes or concerns will be addressed?
The parents should be asking at the IEP meetings what options or alternatives they have if no progress is being made before the next IEP meeting. What changes can the school make without notifying parents? What changes require notifying parents? Or what happens IF the school environment shows it is impeding the individual progress of a student? How will the school district respond?
These are issues that need to be discussed while the IEP is taking shape, before anyone signs off on any paperwork. Once these questions are addressed and noted, then the team can begin developing a plan designed for the student.
Wednesday, August 4, 2010
"Pick That Baby Right Up Off The Ground!"
For Pegi
Everyone has their own story about when their own personal realization of having a child with special needs finally sinks in. The realization that those charts in books and the pediatrician's office are reserved for other children, not yours. The realization that comes after moving through those different stages of human emotion at the deep end of the universe and the euphoria afterward from knowing instinctively that maybe (just maybe) everything's going to turn out just fine.
For some parents, it's one single moment in the course a child's lifetime. For other parents, like me, it's a perpetual event orbiting around and around. It's that moment when you realize that what your child needs most in this life more than money and therapy and adaptive equipment is what most children need - tender loving care. The challenge for many of us is being in the frame of mind tha allows this love to flow freely without the usual distractions and interruptions. The barriers. The frustrations. The anger. The jealousy. The martyrdom. The hero-worship. The failure. The blame.
Just last week, I found myself thinking about medical litigation again because a very young doctor who was giving Elisabeth her eye exam explained to me that "cortical visual impairment" which is written all over Elisabeth's birth records is a "code" for oxygen deprivation at birth.
Medical litigation? Am I crazy? I'ts been over 16 years! I thought I was through wrestling with that demon. I was angry. Very angry.
Driving home, gripping the steering wheel, I found myself (once again) searching very far, far into reaches of the dark universe where that enigma of a pea-sized cyst, dilated ventricles, loosely wrapped optical nerves, and palor-macula suddenly took precedence over my precious cargo of children currently occupying my spaceship mini-van. The dark universe where the words "agenesis of the corpus callosum" suddenly has nothing to do with my 16 year-old daughter's medical condition, her severe delay in development, or the need for piles (upon piles) of paperwork required for her free and appropriate public school education.
Then this old song "Comes A Time" plays on the radio. WNKU. It's a song I never payed much attention to until I realized the author was possibly drawing from his own family experiences bringing a child with special needs into the world. He's been there, done that, or so he's singing about it. It's a simple melody filling up the radio waves going out to anyone trapped, lost, or broken beckoning a very special message about hope and seeing that light at the end of tunnel:
"Pick that Baby Right Up Off The Ground!"
It really is a wonder that tall trees ain't layin' down!
Everyone has their own story about when their own personal realization of having a child with special needs finally sinks in. The realization that those charts in books and the pediatrician's office are reserved for other children, not yours. The realization that comes after moving through those different stages of human emotion at the deep end of the universe and the euphoria afterward from knowing instinctively that maybe (just maybe) everything's going to turn out just fine.
For some parents, it's one single moment in the course a child's lifetime. For other parents, like me, it's a perpetual event orbiting around and around. It's that moment when you realize that what your child needs most in this life more than money and therapy and adaptive equipment is what most children need - tender loving care. The challenge for many of us is being in the frame of mind tha allows this love to flow freely without the usual distractions and interruptions. The barriers. The frustrations. The anger. The jealousy. The martyrdom. The hero-worship. The failure. The blame.
Just last week, I found myself thinking about medical litigation again because a very young doctor who was giving Elisabeth her eye exam explained to me that "cortical visual impairment" which is written all over Elisabeth's birth records is a "code" for oxygen deprivation at birth.
Medical litigation? Am I crazy? I'ts been over 16 years! I thought I was through wrestling with that demon. I was angry. Very angry.
Driving home, gripping the steering wheel, I found myself (once again) searching very far, far into reaches of the dark universe where that enigma of a pea-sized cyst, dilated ventricles, loosely wrapped optical nerves, and palor-macula suddenly took precedence over my precious cargo of children currently occupying my spaceship mini-van. The dark universe where the words "agenesis of the corpus callosum" suddenly has nothing to do with my 16 year-old daughter's medical condition, her severe delay in development, or the need for piles (upon piles) of paperwork required for her free and appropriate public school education.
Then this old song "Comes A Time" plays on the radio. WNKU. It's a song I never payed much attention to until I realized the author was possibly drawing from his own family experiences bringing a child with special needs into the world. He's been there, done that, or so he's singing about it. It's a simple melody filling up the radio waves going out to anyone trapped, lost, or broken beckoning a very special message about hope and seeing that light at the end of tunnel:
"Pick that Baby Right Up Off The Ground!"
It really is a wonder that tall trees ain't layin' down!
Friday, July 23, 2010
Between A Hard Spot and Rock: Cholesteatoma
We finally have a name for Elisabeth's chronic ear problem. I heard it first from her ENT Charles Myer III yesterday.
Elisabeth's chronic ear infection history goes back to infancy and included several sets of tubes and a history of pediatric visits prompted by blood & pus drainage.
It had nothing to do with allergies, swallowing issues, sinus infections, or other red herrings.
It's called Cholesteatoma. It's a benign tumor. A skin cyst growing on the other side of the eardrum.
From an article I extracted from the internet, I learned about possible causes & treatment:
"One of the main causes of cholesteatoma formation is a eustachian tube that does not function well. Eustachian tube problems tend to run in families or certain ethnic groups, such as Eskimos or individuals of American Indian descent. Other disorders, such as cleft palate, Down's syndrome, or other craniofacial abnormalities that impair eustachian tube function may also have a higher frequency of cholesteatoma formation" - Mark C. Loury, M.D., F.A.C.S. © 2006 Advanced Otolaryngology, PC
Treatment is surgery with a 50% chance of reoccurance.
Click on the title above or go here for more information about Cholesteatoma http://www.advancedotolaryngology.com/Pages/PatientServices/1037.html
Elisabeth's chronic ear infection history goes back to infancy and included several sets of tubes and a history of pediatric visits prompted by blood & pus drainage.
It had nothing to do with allergies, swallowing issues, sinus infections, or other red herrings.
It's called Cholesteatoma. It's a benign tumor. A skin cyst growing on the other side of the eardrum.
From an article I extracted from the internet, I learned about possible causes & treatment:
"One of the main causes of cholesteatoma formation is a eustachian tube that does not function well. Eustachian tube problems tend to run in families or certain ethnic groups, such as Eskimos or individuals of American Indian descent. Other disorders, such as cleft palate, Down's syndrome, or other craniofacial abnormalities that impair eustachian tube function may also have a higher frequency of cholesteatoma formation" - Mark C. Loury, M.D., F.A.C.S. © 2006 Advanced Otolaryngology, PC
Treatment is surgery with a 50% chance of reoccurance.
Click on the title above or go here for more information about Cholesteatoma http://www.advancedotolaryngology.com/Pages/PatientServices/1037.html
Sunday, July 18, 2010
Potty Training Children With Disability Labels
I have an article right here for information about potty training.
If you're interested in my story, here it is:
I found that part of my responsibility raising Elisabeth is overlooking one thing to make allowances for something else. And it changes every day. After realizing I was expending more energy "cleaning her up" as she got older, I figure maybe it would be easier to put her on an adapted chair and let nature do the rest. She already spent a good deal of time keeping herself busy with her "self-stims" so why not put her on safe adapted potty chair while we're cooking dinner or making lunch and just see what happens.
The key to successful potty training, I remembered from training her siblings, was matching "readiness" with the times she was relaxed. It was difficult for us to gauge this for Elisabeth due to her spasticity, poor trunk control, and communication delays.
So I set out to create my own list of "why" and "why not" my child was ready to be potty trained. Each time I saw a greater opportunity for trying vs. doing nothing at all.
First, I considered if we were all up to this as family because it required a lot of time, relaxation, trunk support, patience, and physical transfers on and off the adapted chair which can be very stressful on one's back.
Second, I knew it was going to take time so I created a block of time allowing as much as one half hour for each sitting for the morning, mid morning, after lunch, 3 p.m., before dinner, after dinner, and before bed-time. I realized this was going to be challenging but eventually, down the road, I was able to cut back to only 3-4 times a day.
I always started the training during the summer each time so it didn't interfere with her school schedule. I also started an extra hour early in the morning positioning her in her chair for that first stream waiting on hand with a yogurt or banana to reward her. Sometimes I was too late and sometimes not. When she succeeded, I gave her the "good job Elisabeth!" and hugs. When I knew we had missed the opportunity, I assured her that we would try again.
And third, I allowed time for failure because for the first trial runs in her life, I gave up thinking she wasn't ready. I gave up because I thought she didn't have the readiness or trunk control or physical ability to make this happen.
It wasn't until the summer shortly after her 14th birthday that I started seeing results. The first few times, her sitting time was extended in some cases to 45 minutes to an hour, but each time something little happened. One time, we waited for almost an hour and half. And right when I was about to take her off, the phone rang. So I left to answer the phone and when I returned, she had her very first success story.
Six months later she is staying dry most of the day with few exceptions. As long as I continue to give her opportunities to use the potty, she stays dry. As long as I am consistent in providing opportunities for her to sit and relax, she is always successful.
We also created a new early morning ritual using the chair to dress her sitting up which is a lot easier than lying down. So while she is sitting, I comb her hair, brush her teeth, and I use the time for putting her AFOs on, her pants as far as it will go while she's sitting, and next her shoes. Before you know it, out it comes, and she's ready for breakfast afterward.
The challenge is when we go out because we can't take the potty chair with us. I usually have to allow for abnormal times to be in restroom with her which often times cuts into the entire purpose of going somewhere. When we go on vacation, for example, I allow for time to spend with her. Hopefully there is always a clean restroom available for us to maneuver around. Unfortunately, when there is nothing available, Elisabeth goes without.
Our last few trips, she stayed dry the entire time.
I can't guarantee anything because each child is so different. In hindsight, I can only offer my experience as a suggestion keeping in mind that the actual process of potty training is pretty much the same for typical developing children as it is for children who have who have low tone, spasticity, and who are experiencing delays in communication ability and simple motor skills.
Potty training requires our patience and their readiness. The only difference, of course, is that it's a little harder to read the signs with our children. And it requires special adaptations in the bathroom to meet their special needs.
Thursday, July 15, 2010
She's Sixteen, She's Beautiful, and She's NOT Sleeping!
Elisabeth has been almost clockwork on the sleep cycle since she turned 3. Before that, she didn't sleep at all until we were prescribed a sleep aid to help her develop a sleep cycle.
Typically, she goes to bed by 9:30 without a hitch until we started noticing a few weeks ago Elisabeth struggling with lying down and vocalizing to us that she was not ready to go to bed.
She gets loud, too. And then she starts with the crying, but it's not her "pain" cry. We think it's her "I'm bored and I'm not ready to go to bed."
Tonight for example, she used the potty at 9:00 pm and had her usual dish of ice cream with her Dad while we watch a movie. Typically this is not an issue except that until a few weeks ago, you could brush her teeth, read a little bit, and she would fall asleep.
Now when it's bed time, she resists! So back she goes in the swing for about a half hour or the potty and we hope she falls asleep.
At 10:30 we moved her into her sister's room where Dad reads to them both while Elisabeth sits in a bean bag. We sense she's asleep so we put her in her own room in her own bed and she then starts in with the resistence. So I put her on the potty until 11:15 after which I put her in the swing.
So it's 12:10 a.m. and I hear that breathing that I usually hear when she's sleeping. So I look over and she's sound to sleep in the swing.
Time to put her to bed, only it's about 4 hours later than I want to stay up!!!
Monday, February 15, 2010
The "R" Word
Everyone knows there is no single template under which all disability issues fit for the entire population of people with disabilities. So why pick the very one issue that makes people go crazy? The one issue we have absolutely no control over? The use of the "R" word.
Advocacy is the only thing we have control over!
Advocacy is not about winning an argument about exclusivity rights to the "R" word. Advocacy begins with a personal acknowledgement that all children are valued regardless of their ability or disability.
While I share Ms. Palin's offense to the "R" word, I do not share her view that bringing children with disability labels into world is martyrdom. Neither do I see them as "innocents" or "less fortunate" because it promotes inequity and advocacy is about making the playing field level for all our children.
Trig is a beautiful little boy. His disability label does not make him "less" of anything. How ironic that it took a silly cartoon to point out kids like Trig can be "more" than their disability label.
Advocacy is the only thing we have control over!
Advocacy is not about winning an argument about exclusivity rights to the "R" word. Advocacy begins with a personal acknowledgement that all children are valued regardless of their ability or disability.
While I share Ms. Palin's offense to the "R" word, I do not share her view that bringing children with disability labels into world is martyrdom. Neither do I see them as "innocents" or "less fortunate" because it promotes inequity and advocacy is about making the playing field level for all our children.
Trig is a beautiful little boy. His disability label does not make him "less" of anything. How ironic that it took a silly cartoon to point out kids like Trig can be "more" than their disability label.
Friday, January 22, 2010
Friday, December 18, 2009
Sunday, December 6, 2009
Elisabeth Bowls 65!
Yes, that's Elisabeth yawning at her bowling tournament sponsored by the Special Olympics. She got up early Saturday morning putting in a respectable score of 65 which is better than her Mommy ever did.
Can't say enough good things about Special Olympics because it allows our kids to be who they are without being patronized for their disability label. Do you know what I mean? It's ironic, isn't it?
There was this guy I listened to on the radio who was talking about his experiences after his bicycle accident in the 6th grade that left him dependent on his wheelchair for mobility. He was saying that if people would only separate his disability from who he is, the world would be such a beautiful place to live.
Can't say enough good things about Special Olympics because it allows our kids to be who they are without being patronized for their disability label. Do you know what I mean? It's ironic, isn't it?
There was this guy I listened to on the radio who was talking about his experiences after his bicycle accident in the 6th grade that left him dependent on his wheelchair for mobility. He was saying that if people would only separate his disability from who he is, the world would be such a beautiful place to live.
Thursday, December 3, 2009
HOLD YOUR APPLAUSE PLEASE!
This morning, my husband and I started talking about that little boy in Florida who was voted "out" by his classmates and what on Earth the adult in that situation was thinking. When did it become okay to use democracy to exclude individual?
We have to think about the messages we send to our children.
In the case of the little boy, even if the message the teacher was sending on that particular day wasn't intended to hurt the little boys feeling or make him feel excluded, it did. She should have known better. The message she was sending to his typical developing peers is that it's okay to get rid of somebody you don't like just as long as you have a majority of people who will back you up which is teaching them what?
Lynching is okay?
Hold your applause, please.
What about the messages we send to our children in social settings. Social settings that have people of all abilities and labels. Remember the "little down chorus girl" who was laughed at during a concert because she was singing off key? (When did children become their disability label.
What kind of message was being directed to the younger audience participants. It's okay to laugh at people who sing off key even if she thinks she's singing on key? It's okay to laugh at people who are trying to fit in?
Several times during graduation commencements over the years, I observed how people start clapping for the most ridiculous things. Applauding at what is considered an embarrassing moment for most people. For example, there were chuckles, giggle, and clapping when the wheelchair lift began working after a short delay in getting the graduating recipient to his position with his classmates.
How about clapping for a visually impaired person who was guided back in the right direction after going off in another direction that would have sent her tumbling down.
Huh? Would you clap for your son or daughter after she tripped a little going up the steps to receive her diploma?
It's one thing when a soccer competitor takes out our kid on the field and we clap when they get up, but I don't see the point of clapping for a kid just because the stupid wheelchair lift wasn't working or for somebody who is steered in the wrong direction.
And I don't think laughing at a child who sticks out a little is comedy.
So please hold your applause or laughter for when your own kid does something brilliant or funny.
We have to think about the messages we send to our children.
In the case of the little boy, even if the message the teacher was sending on that particular day wasn't intended to hurt the little boys feeling or make him feel excluded, it did. She should have known better. The message she was sending to his typical developing peers is that it's okay to get rid of somebody you don't like just as long as you have a majority of people who will back you up which is teaching them what?
Lynching is okay?
Hold your applause, please.
What about the messages we send to our children in social settings. Social settings that have people of all abilities and labels. Remember the "little down chorus girl" who was laughed at during a concert because she was singing off key? (When did children become their disability label.
What kind of message was being directed to the younger audience participants. It's okay to laugh at people who sing off key even if she thinks she's singing on key? It's okay to laugh at people who are trying to fit in?
Several times during graduation commencements over the years, I observed how people start clapping for the most ridiculous things. Applauding at what is considered an embarrassing moment for most people. For example, there were chuckles, giggle, and clapping when the wheelchair lift began working after a short delay in getting the graduating recipient to his position with his classmates.
How about clapping for a visually impaired person who was guided back in the right direction after going off in another direction that would have sent her tumbling down.
Huh? Would you clap for your son or daughter after she tripped a little going up the steps to receive her diploma?
It's one thing when a soccer competitor takes out our kid on the field and we clap when they get up, but I don't see the point of clapping for a kid just because the stupid wheelchair lift wasn't working or for somebody who is steered in the wrong direction.
And I don't think laughing at a child who sticks out a little is comedy.
So please hold your applause or laughter for when your own kid does something brilliant or funny.
Wednesday, September 30, 2009
Thank You, Charles Ballard
We're in the middle of making our bathroom accessible and while searching for a "barrier free" entry shower pan, we started to get quotes that were in the thousands.
Just for the pan! A 48 x 48 barrier free fiberglass shower plan.
So I started calling the companies that make these special shower floors to find out what the deal was on the cost. At Best Bath in Boise, Idaho, I talked with the representative who directed me to one of their distributors, Charles Ballard, in Indianapolis, Indiana.
He's an honest businessman who sold one to me for under $700 (plus he threw in the barrier strip, epoxy, and drain.) Even he was surprised how high the quotes were when I told him. He runs an online medical supply company so if you see his name, I can vouch for his honesty and integrity.
Just for the pan! A 48 x 48 barrier free fiberglass shower plan.
So I started calling the companies that make these special shower floors to find out what the deal was on the cost. At Best Bath in Boise, Idaho, I talked with the representative who directed me to one of their distributors, Charles Ballard, in Indianapolis, Indiana.
He's an honest businessman who sold one to me for under $700 (plus he threw in the barrier strip, epoxy, and drain.) Even he was surprised how high the quotes were when I told him. He runs an online medical supply company so if you see his name, I can vouch for his honesty and integrity.
Friday, August 28, 2009
HC/dd or MR/dd Levies: Fighting a Losing Battle?
Just yesterday, I read over the above memo about the upcoming tax levy campaign from Cheryl Phipps, Superintendent of Hamilton County Board of Developmental Disabilities or Mental Retardation and Developmental Disabilities.
The very first thing that stuck out was the "no one currently served will be without services" which in the past has been translated as no new students can be accepted at HC/dd formerly known as MR/dd schools. Does this mean that any parent living in Hamilton County looking for a free and appropriate public education for their child with special needs will not find it at the two remaining MR/dd schools even though they are paying for it through property taxes? Aren't parents living in Hamilton County within their legal right to request it as an option if an environment with overall integrated services are not available for their child at the district school?
The next concern I had was reading "asking school districts to share in more of the costs" which from the previous levy has only perpetuated a system of inequity for children with special needs. Children who live in school districts that cannot afford to pay, for example, do not have the same opportunity for a free and appropriate education according to their ability as the children who live in school districts that can afford to pay.
How cannot this be an issue for any county commissioner or anyone determining where children receive their free and appropriate education? Unless they are at an IEP meeting, part of the IEP team, how can they define "services" that ultimately result in how children receive their education?
Once a child is placed into alternative facilities like an HC/dd school, they cannot be transferred without the consent of the parent. The IEP, for example, cannot be "cut and pasted" onto a different location without consenting the parent or caretaker.
The reason why parents and caretakers find their way into HC/dd schools is because the entire facility is dedicated to allowing a free and appropriate education according to a child's special ability and development. It is the least restrictive environment that also enables a child to learn according to their own ability.
What makes HC/dd unique to public school is the physical setting, the special teachers, the all inclusive and integrated sensory therapies throughout the day in general that cannot be duplicated at the district school.
Didn't we learn from the last levy and associated budget cuts which resulted in the closing of Breyer School that school district administrators, county administrators, and HC/dd staff cannot operate in isolation of the families who are only pursuing their child's right to a free and appropriate public education?
What I fear is that we are heading down that road of further narrowing the opportunity to children in our community. What I fear is that parents no longer have control over how FAPE is implemented.
Monday, July 27, 2009
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