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SITEMAP
Alphabetical listing of
most pages on this site: Exceptions
will be state and county pages. Some are not linked from
this sidebar but from within a page
The CP Links Page is
where you will find most Federal, State and local County pages.
THE HOMEPAGE
WHAT IS CP
CEREBRAL PALSY
My attempt to
clarify CP you may find the information provided by NINDS is more
specific and detailed
TREATMENT of CP
There are many
different treatments and I only name those I am familiar with
Physical
Therapy
How it
is essential to maintain range of motion
Occupational Therapy
How it is
essential to maintain quality of life
Speech Therapy
What I know through my
experience By far not even close to what you
should know
Medication and Orthotics
Again what
I know through experience Much more
can be had searching the net or talking with doctors and therapists
CP LINKS
To Federal, State, County, City / Town and School District WebPages.
Health links and hopefully links to local disability sites and activity and events calendars
just drill down to the page you want
Cerebral Palsy Glossary
Terms
used when referring to items related to CP . Many of us may see these on a
doctors report and not know what it really means.
More Information of CP provided by NINDS
Perhaps a bit more concise and informed than my attempt to tell
of what CP is.
What Causes Cerebral Palsy?
What are the Risk Factors?
Can Cerebral Palsy Be Prevented?
What Are the Different Forms?
What Other Conditions Are Associated With Cerebral Palsy?
How Does a Doctor Diagnose Cerebral Palsy?
How is Cerebral Palsy Managed?
What Specific Treatments Are Available?
Drug Treatments
Surgery
Orthotic Devices
Assistive Technology
Alternative Therapies
Are There Treatments for Other Conditions Associated with Cerebral Palsy?
Do Adults with Cerebral Palsy Face Special Health Challenges?
What Research Is Being Done?
Where can I get more information?
Specific Neurological
Disorders
Many of these do not fall under the
heading of CP but are disabilities nonetheless. My take on the IEP,
IDEA 2004 (Public Law 94-142 & Public Law 101-476), and the 504 plan.
In 1990, changes to Public Law 94-142 arrived through
the Education of the Handicapped Act Amendments of 1990 (Public Law
101-476). Most apparent was the law’s name change – instead of the
Education of the Handicapped Act, it is now called the Individuals with
Disabilities Education Act. IDEA 2004
IEP overview
A Guide to the Individualized Education Program with sections
highlighted and comments by me
504 plan & IDEA Q&A
Protecting Students and others with Disabilities also a
list of accommodations and modifications as would relate to the school
environment. More on accommodations in the Parent and Educator Guide
Appendix E
Parent &
Educator Guide of 504 Plan concepts and real life accommodations.
Drafted by the OSPI and 5 Puget Sound area School Districts but would be a
valuable asset to any fighting for their child's 504 accommodations
anywhere U.S.A.
IDEA 2004 summary&
Title 1 IDEA as written
(Public Law 94-142 & Public Law 101-476)
A lot of legalese and unless you are a lawyer or are
looking for specific law probably will not be of much benefit.
You will better spend your time reading the Parent and Educator
Guide, the IEP overview and the 504 plan & IDEA Q&A
Washington State Chapter 392-172 WAC
SPED special education and the IEP
This is Washington State law as
regards the IEP and special education
Also a bit about our (current
Nov 08) personal
battle for Amber
FORUMS (BBS)
Registration is required but please use the forums to ask and
receive answers as well as post your needs or what help you can provide
LIVE CHAT
MEMBER PAGES
Those who have joined with me to try to educate everyone of the
trials of having a child with CP or other disability and where
to find information
Pierce County Events
Local events for the disabled If you
know of any let me know I'll post them here
CONTACT US
DONATIONS/GIFTS
AMBER'S STORY
Amber's story from birth to I
started this website. Her continuing
story is in the Blog
AMBER'S PARENTS
A bit about us
and maybe you will get to know why we did what we did and continue to do
what we do by knowing a bit about us.
Blog of Amber and Family
The continuing story of
Amber and family updated as I have time.
SHARE YOUR STORY
This is different from
the Forums as the Forums are where you would post questions and answers.
In the share your story section people like you will post their
unique experiences and through what is said you may find you are not
alone. You may also find a friend and someone you can relate to. And
possibly a way to realize your own goals.
CP FAMILY LINKS
Websites created by people who have CP or someone in their family
has CP. Net-etiquette applies. All sites are subject to approval. Banners
and text allowed on these links.
NON CP RELATED
OTHER LINKS PAGES
Posted 1st come 1st served. We hope to have many of our friends
and supporters post their pages here. Net-etiquette applies.
All sites
are subject to approval. All Non-CP links are text only with a line or
two of information of the
link posted.
Please notify me of any broken links so I can
remove or fix them.
JOIN OUR NETWORK
Join with me in trying to educate the public of CP and other disabilities
WHY THIS SITE?
What motivated
me to build this site
CONTACT US
Direct your comments
to Robert.
Robert wrote a Science Fiction trilogy while being laid up. It took 4
years to complete and he has for sale Book 1 of the trilogy HERE
He is awaiting editing and copyrights on books 2 & 3 before
sending them to the publisher. Book 1 can stand alone and is a complete
novel of 237 pages and 135,000+ words in PDF format. Making Money Online (or not)
What I've tried and what I believe. The things to
watch out for. Many with disabilities have a very difficult
time working a 9 to 5 so working online is a viable alternative. However be wary
of those who will take your money and not deliver any worthwhile information.
Other sites I have or to be more precise
the wife has and I take care of. www.tamicraft.com www.vintageslips4u.com |
Cerebral Palsy does not include trauma due to accident or illness
unless that accident or illness happens during pregnancy, birth or a
generally accepted term of up to a year of birth. Though many doctors
will include any illness or accident so long as it happens during
childhood and many use the phrase to include any motor musculature
defect and/or mental defect arising from just about any cause at any
age.
One must consider the name Cerebral Palsy as a catch-all phrase
that has many facets. The way in which a particular type of CP presents
itself may have another name but is still within the CP family. Cerebral
Palsy literally means Brain (Cerebral) and Movement or Motion (Palsy).
The scope of CP has been broadened to include mental handicaps as well,
especially if those handicaps occurred before, during or shortly after
birth.
For instance if one had a birth defect such as under-formation of
the frontal lobes resulting in mild to severe motor and mental
disabilities this would be a form of CP. If an infant were to have a
stroke before, during or shortly after birth resulting in a disability
this would also be considered CP. If a baby developed an infection of
the brain or suffered a fall or abuse that resulted in brain injury
this, by most, would be considered a form of CP.
Cerebral Palsy therefore is not one thing but could be any number
of a million different things. Cerebral Palsy is just the name by which
we lump any number of diagnoses under. The actual name of the affliction
could be any number of things.
My daughter, for example, is diagnosed with mild to moderate left
hemiplegia. This presents in loss of fine motor control of the left side
of her body. She had a stroke either during labor or at the time of
birth. Her ability to move as healthy individuals do is impaired. But
this is only the beginning of the affliction.
She not only has loss of fine motor control on her left side, but
also experiences Dystonia of her left leg/foot and left arm/hand. It has
recently started affecting her back. (This is uncontrollable
movements and cramping) She wears a foot and leg orthotic to keep her
left foot and leg aligned. She also wears a hand/wrist orthotic to keep
her hand and wrist from curling inward. She takes medications for
this as well.
She also has problems with her eyesight. Not just in having to
wear glasses but in a condition where-by her eyes do not focus together.
She can be reading a line on a page and see two words, one from the line
she is reading and one from the line below or elsewhere on the page.
Amblyepia and Esotrepra. This is a great impediment to
learning. She now wears bifocals and has been given exercises and
colored cards to help train the eyes to better coordinate.
She also suffers seizures which at the moment are controlled by
medication.
She suffers
chronic pain as a result of the Dystonia and is a slow learner and at one
time as small child scored a 69 on the WISC III which is in the range of
mental retardation. But with a huge amount of effort by the school and us
as parents we have been able to bring her to near grade level. Though this
required much study and Amber sometimes spent hours in study, staying up
to 11 pm or later doing homework. We have found she has NLD ( Non-Verbal
Learning Disorder) Which is common among those with afflictions of the
right hemisphere of the brain. More info on this particular learning
disorder can be found here: http://www.nldontheweb.org
She also has been diagnosed with Children's Rheumatoid Arthritis
which the Doctors say may have been brought on by her CP. (Her lack of
full range of motion)
All the above except the CRA are conditions that in and of
themselves would be considered Cerebral Palsy. Amber had a stroke at
birth and an MRI shows the right side of her brain is severely affected.
But though she spent some time in neonatal ICU and was a bit slow in
developing we had no clue she had CP till she was over a year old. Once
we found out we did what we could to mitigate the condition but One must
remember that there is NO cure for CP. One can only hope that new
pathways form in the Brain to compensate for those lost and that you can
find apparatus that can make life a bit easier. But CP is a lifetime
affliction with no cure. (See the section on treatment)
Recently she has been
having difficulty relieving herself. Her bladder is pretty much full all the
time and we have had to take her to the emergency room twice so far to have a
catheter inserted to drain her urine. They are currently working on this but if
they do not find a cure she will have to catherize herself daily to empty her
bladder. The neurologist does not think this is related to her Dystonia and
spasms but what else could it be? They have done many tests and so far have
found nothing else to explain it.
I have
seen sites say that "There will be no change in CP during the persons
lifetime" And I say bullshit! Granted the area of the brain affected may
not change but the way the affliction can and does manifest itself will present
in different ways as your child grows. New symptoms related to the original
condition can occur as your child grows and develops. I have seen this in my own
child and in others I know. So do not think for one moment that if your child is
only showing signs of say minor hand control difficulties, that this will be the
only symptom you child will have throughout their lives. It may well be, but
odds are more symptoms will arise in time. If they do not consider yourself
lucky but you should be prepared for the possibility that there may be more
symptoms of the CP that will manifest as your child grows.
If your child seems to be delayed or exhibits signs that they may
have CP you should immediately take your child to a competent doctor,
preferably a neurologist for an examination. An EEG can show if there is
any seizure activity or abnormality in brain function.
Stimulation of motor skills at a very young age
(from birth) help the brain to
develop pathways around damaged areas. Medications can relieve some
conditions you may be aware of. And if you find fault with a
hospital or doctor you generally have a statute of limitations in which
you can bring suit. Here in Washington State it is three years from The
point of the injury or from when it was first known.
Ok. I'm gonna go off on a bit of a tangent here so those
interested in more on CP, scroll down to the section on the CDC or hit the Links. Those interested in my diatribe
read on.
Here in Washington you can only sue for actual lifetime needs
which are determined by someone familiar with special needs children and
the associated costs. They are supposed to be independent evaluators and
they are supposed to take into account 'lifetime needs' but they are NOT
totally independent and they don't take into account medical inflation
or truly incorporate lifetime needs as they cannot know what may
present in the future. With most children you cannot truly get a handle
on mental handicaps till your child is school age and other afflictions
may arise long after the statute of limitation is over, as in my
daughters case the CRA did not present till she was 7 or 8 years old and
the Dystonia not until she was 15 years old. Her bladder problems at 17.
Hormonal changes at puberty
can have an effect on seizure activity and other symptoms.
In my daughter case they figured her
disabilities would cost in therapies and Orthotics somewhere in the low
6 figures over her lifetime of 80 years. Under $250,000. In other states one can sue for damages
and awards of up to and above $100,000,000.00 is not unheard of. But
here in Washington State you will be lucky to get enough to pay the
bills. The assessment , at least in our daughters case was far from
accurate and did not truly take into account inflation and also because
some things had not yet presented they were not a part of the assessment.
Beware to jump too soon to collect for perceived CP related damage as
these will become more apparent as your child ages. If Washington State did
not have this archaic time limit on filing suit, we would have waited
and probably received more in compensation.
As, here in Washington State, the suit must be filed within three years of the injury or diagnosis, you
will most likely not know the extent of the condition till much later in
your child's life. It will most likely turn out the amount you get will
not cover expenses especially after the lawyer gets 35% and you have to
pay back the insurance company and the Lawyers expenses (Your expenses).
Little thought is given to inflation or rather that medical inflation is
about 20% a year or more compared to 3% ordinary. Some money will go to
you but most will be set aside for your child and used for their needs.
The Courts will require you have a Guardian appointed to see to it that
your child's rights are observed and you will need to do annual
accountings and in most cases a Lawyer will be required by the Courts to
file them, and after you have paid all these individuals there is
little left for your child to receive when she turns 18 and none that
will last till she is 80 years old. And NOBODY will care except you and
your child! Maybe close family. But surely not the Courts or the Lawyers
whose only interest lies in how much money they can take from you.
Oh, The
lawyers are all "concerned" and "caring" till they get their
money. Then it is on to the next case and you are just another nobody. Do not be
pressured into doing anything that you feel is not right for your child. Weigh
carefully what is being offered and what you honestly feel in your gut is the
right thing to do. Be as involved and knowledgeable as you possibly can and do
not just sit back and let a lawyer handle it by themselves. Know your rights and
be involved. It is the only way you can be assured that you are not being played
as I was. If you live in Washington State or another that does not allow for
punitive damages be sure that any settlement takes into account that there
exists a possibility that your child may develop complications that have not yet
presented themselves.
My personal opinion...If you are having a child and in anyway
think there might be a problem opt to have the child in another State
which allows for damages or opt for a c-section so as to limit the harm
that can come to your child. But in most all cases we don't know there
is going to be a problem so we are ignorant of what we should have done.
We expect the Hospital staff and the Doctors to know what they are doing
and leave it up to them to make the right decisions. The problem is some
don't. The CDC estimates that one of every 278 children have CP. What
are the odds that your child might be that 1 in 278? And what are the
odds that the reason will be the fault of a nurse or doctor or hospital?
If you wind up getting a Lawyer get them to limit what they take
to a lower % or at least lower after a certain amount. Remember a Lawyer
is NOT your friend. No matter how nice they seem they are interested in
one thing and one thing only. That is a quick buck. They will want to
settle rather than go to trial and they will want to do it as soon as
they can so they can move on to other cases. Some may bide their time as
you are paying expenses but there is usually a limitation on how long a
suit can wait to be filed. It is all about the money to the Lawyers. Do
NOT expect them to so much as send a card after the settlement. Remember
you are gonna pay for the expenses so they are only out time. Also,
despite what the Lawyer says, if you think this is a slam dunk case and
that the Lawyer has already got a winner on his hands you tell them what
you think and you tell them you will take this slam dunk case to another
Lawyer if they don't lower their % or make it so they have to lower it
over a certain amount. If it really is a slam dunk, and the Lawyer knows
it, he will take less.
OK, As you can tell I'm not a Lawyers biggest fan. BUT if you need
one do not hesitate to get one. Don't try to make a case yourself. A
Lawyer might cost you a lot, maybe, no. No maybe's, they will cost you more than they are worth, but
unless you are a legal wiz you need a Lawyer. And not just any Lawyer
but one who handles medical malpractice cases and one who has a damn
good track record.
Learn from my mistakes.
YOU are your child's best advocate. FIGHT for them. It's your DUTY
as a PARENT!!!
I know... If foresight was like hindsight we'd be a damn sight
better off.
Sorry do I sound bitter? Yea. Well, maybe cause I am. My daughter
will have another 70 years to dwell on the fact that we live in
Washington State and she has to suffer, more than she should have to,
because of it.
And I'll have to live with the fact that I didn't have the balls to lay it
all on the line and fight to the end. See The
Lawsuit to understand.
Learn from my mistakes. Fight! Fight for your kid! No one else is gonna
give a damn. You have to be the one to make the hard decisions and
FIGHT!!!! Can you really live with yourself if you don't?
A tidbit of
information from the CDC:
New Data Show 1 in 278
Children Have Cerebral Palsy
Learn
more about the signs and causes of cerebral palsy and what to do if
you think your child might have it.
Cerebral palsy is a group of disorders that affect a person's ability to
move and keep their balance and posture as a result of an injury to
parts of the brain, or as a result of a problem with development.
Cerebral means having to do with the brain. Palsy means weakness or
problems with using the muscles. Often the problem happens before birth
or soon after being born. Cerebral palsy causes different types of
disabilities in each child. A child may simply be a little clumsy or
awkward, or unable to walk at all.
How Common Is Cerebral
Palsy?
CDC released a new study in the March 2008 issue of Pediatrics
which shows the average prevalence of cerebral palsy (CP) as 3.6 per
1,000 children or about 1 in 278 children. This first report of the
prevalence and characteristics of CP, the most common cause of motor
disability in childhood, are from Georgia, Alabama and Wisconsin.
The study, "Prevalence of Cerebral Palsy in 8-year-old Children in
Three Areas of the United States in 2002: A Multisite
Collaboration," found the prevalence to be remarkably similar
across all three sites, ranging from 3.3 in Wisconsin to 3.8 in Georgia.
All sites reported the highest prevalence among boys, African-Americans
and those living in low- and middle-income neighborhoods. Prevalence
rates were lowest among Hispanic children.
What Are Some of the
Signs of Cerebral Palsy?
The signs of cerebral palsy vary greatly because there are many different
types and levels of disability. The main sign that your child might have
cerebral palsy is a delay reaching the motor or movement milestones. If
you see any of these signs, call your child's doctor or nurse.
A child over 2 months with cerebral palsy might:
• Have difficulty controlling head when picked up
• Have stiff legs that cross or "scissor" when picked up
A child over 6 months with cerebral palsy might:
• Continue to have a hard time controlling head when picked up
• Reach with only one hand while keeping the other in a fist
A child over 10 months with cerebral palsy might:
• Crawl by pushing off with one hand and leg while dragging
the opposite hand and leg
• Not sit by himself or herself
A child over 12 months with cerebral palsy might:
• Not crawl
• Not be able to stand with support
A child over 24 months with cerebral palsy might:
• Not be able to walk
• Not be able to push a toy with wheels
What Causes Cerebral
Palsy?
Cerebral palsy is caused by a problem in the brain that affects a child's
ability to control his or her muscles. Problems in different parts of
the brain cause problems in different parts of the body. There are many
possible causes of problems, such as genetic conditions, problems with
the blood supply to the brain before birth, infections, bleeding in the
brain, lack of oxygen, severe jaundice, and head injury.
Learn more about causes
of cerebral palsy.
What Can I Do If I
Think My Child Might Have Cerebral Palsy?
If you or your doctor has concerns about cerebral palsy, you can seek the
help of a specialist such as a developmental pediatrician or child
neurologist, and you can contact your local early intervention agency
(for children under 3) or public school (for children 3 and older). To
find out who to speak to in your area, contact the National
Dissemination Center for Children with Disabilities by calling
1-800-695-0285 or logging on to http://www.nichcy.org/.
More information
can be found on the CDC website located here: Click Logo.
CDC.gov ( www.cdc.gov ) is your online
source for credible health information and is the official Web
site of the Centers for Disease Control and Prevention (CDC). I have tried to present you with as much current information as I can
so you can make informed decisions. I would say however that I would definitely
see a child neurologist if you have any concerns and I would demand that an MRI
be done to see if there is any abnormality in the brain. Also an EEG and Cat
scan should be done as well. Be proactive and not reactive. Let it be known that
you are a parent that is willing to take it to the n'th degree if necessary to
make sure your child not only receives the 'standard of care' but the absolute
BEST care. I cannot stress enough just how
important YOU as the parent are to the process of advocating for your child. We
all like to think doctors and even lawyers are competent and will do what is
right and best for our child. The fact is that many are not competent and they
do not place your Child's care as their number one priority. Only you, as the
parent, will hold your Child's interests above your own. So be prepared to fight
for your child. Arm yourself with every tidbit of information you can get your
hands on cause knowledge is power. Knowledge will help to prevent you from being
swept along as the doctors and lawyers try to play their games. I know it is not easy. I can only say that no matter how hard it is, it
is your responsibility as a parent to try to be as informed and proactive as you
can. I only wish I had been more informed and proactive when it really mattered.
Learn from my mistakes and make a difference in your child's future. Remember that Cerebral Palsy is merely an umbrella name given to what
could be a million different conditions. Depending on the condition early
intervention through therapy, medication and as a last resort surgery can
mitigate the symptoms. There is no cure. But unless you fight for the best care
possible you will never know if any therapy, medication or other medical
procedure could have been beneficial. And as for lawyers well I think you know
how I feel about the slime balls, but they are a necessary evil. You cannot take
on a hospital or doctors lawyer on your own. You need an advocate and a damn
good one. So though they cost more than they are worth and may try to play games
to get you to do what they want, so long as you keep sight of your child's best
interests then you should fare well. If you keep up to date and knowledgeable of
what is going on and what is available to you, you'll do better.
I would suggest you read the page on this site called
" More Information
of CP provided by NINDS As it delves deeper into CP and its causes
and treatments than I do on this page. If you have questions post them in
the forums.
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You can also mail a Donation/Gift to
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ALL these pages are open to the public. As such you agree that you
are at least 18 years of age when submitting any posts. That you agree and
consent that any pictures you send are open source and that You will not
hold me or this site liable for any damages whatsoever. That any contact
you make with others through this site are solely your responsibility and
you in no way will hold this site or me or any person or entity liable in
any way for any damages that might occur by your use of this site and the
various posts, chat and forums available. If you do not agree to any of
these terms then do not use this site.
I cannot force
any to use the forums but I would encourage you to do so if you have
questions you would like answers to or have a statement you would like to
make. I know that having to register and using the anti-spambot code makes
you have to do one more step than most, but it also insures that the
forums are not bombarded by spambots posting crap on the site. I try to
check the forums at least weekly (often daily) and I have to say that so
far I am disappointed that none have chosen to take advantage of this free
opportunity to get and give information. I built this site to help the
disabled get information and the use of the forums and sharing your
stories is a huge part of that endeavor. Please help one another and I
will try to answer what I can as well. We are a community of the disabled
or parents of disabled children and we should do whatever we can to help
each other gain the upper hand or help each other cope with difficult
situations. Just go to the forums page and write down the answer to the
anti-spambot question and enter it on the registration page. You only need
do this once to have full access to the forums.
If you have a
site that deals with any disabilities then consider either joining
CPFSN.org (it is totally
free) and having a link to your site on the appropriate page (e.g. State,
County) as well as the ‘Members’ page or doing a simple link exchange
and having your site appear on the ‘CP Family’ links page, if you or
your child has CP or any disability.
If you do not
have CP or a child with CP or have a site devoted to any disability you
can still have a reciprocating link placed on the Non-CP related links
page. A link exchange would not only show your support of this site but
would increase your ranking with search through having another outside
link (SEO).
Use the ‘Contact Us’ page and email Robert if you
are interested in any link exchange or joining CPFSN.org. Send the
information of the site you want us to link to and the code you would like
entered. I cannot guarantee that all requests will be honored but I will
take a personal look and make a fair and unbiased decision.
|
2007
-2008