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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?
447 Specific Neurological
Disorders
Many of these 447 disorders do not fall under the
heading of CP but are disabilities nonetheless. Links to resources for all
447 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. Though developed in WA. State
this should be applicable in any State as the IDEA 2004 was used as a
guideline when amending the law. Highlighted sections with comments.
Also a bit about our (current
Nov 08) personal
battle for Amber
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.
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
CP FAMILY LINKS
Websites created by people who
have CP or someone in their family has CP. Sites whose pages are not directly
disability related. Net-etiquette applies. All sites are subject to
approval. Banners and text allowed on these links.
DISABILITY
LINKS PAGE
These would be links to commercial
disability links pages where you may find more detailed information of specific
disabilities as well as commercial products and services for the disabled. Links are text only with a line or two of information of the link
posted..
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
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Cerebral Palsy can run the gambit from slight tremors/seizures or
learning deficiencies to total dependence on others.
As with Amanda (left) and my daughter Amber (right)
above.
Amanda is severely disabled with little control of her body. She
does not speak though she can indicate what she wants to some extent and
she has severe diabetes. She is totally dependant on her mother.
At 'near' the other end of the spectrum you will find Amber.
Amber suffers left hemiplegia, Dystonia, painful spasms and rheumatoid
arthritis. She has recently become wheel chair bound at school and when
having to walk any distance and her bladder is affected and she has trouble
relieving herself and needs to be catherized every so often. She also has
NLD and suffers chronic depression.
To read more of Amber and our stories click on the links
on the left navbar. Or go to the sitemap for more info of
all the links. Many links are not on every page but are linked through relevant
pages. The sitemap will have most pages of this site
listed so you can find what you are looking for with ease. Other sites will
either be on the left navbar or on the linked pages.
For example CPLinks,
Federal, State, County etc. on the left nav-bar is a "drill down"
link. By clicking on the CPLink you get to the page
which has the Federal and State links. Click on a State link and you get the
County links and in most cases links to schools and other activity sites.
Washington State is the only complete listing and Pierce County the only that
has links other than the Health department and Schools which all the Counties in
Washington State have. I will add more pages as I have time or if any send me
information.
I am trying to provide all the
relevant information I can in one place ( This Site) so you do not have to spend
weeks or months looking for information as I have had to do. There are just so
many hours in a day and as one person I am doing the best I can. It may take
years to complete and any help you can provide would be appreciated.
I have made a commitment that I will
continue to make as much progress as I can on this website in order to provide
information to those in need.
The following is information of
Amber and what you will find on this site. If you are not interested just look
to the left nav-bar and click on the link that is of interest.
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As Amber had a stroke at
birth and most of the right hemisphere of her brain was affected
she not only has left hemiparisis but has developed Dystonia as well. I
would be remiss if I did not include some information of NLD (non verbal
learning disorder) which is a symptom of the damage to the right
hemisphere of the brain. One does not need to have a traumatic event
like Ambers stroke or any other brain injury to have NLD but it is most
common in those who do.
There is an excellent
website that will inform both parents and professional educators of NLD,
how to diagnose it and what may be done to mitigate some of the
effects.
NLD On The Web dot Org
www.nldontheweb.org/
If your child has NLD this site is perhaps the best
place to go to find the information you need.
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Just a Thought
Not that I am vying for a donation.
In time I will create a separate page for this information. But not all
charities are the same. Some the salary of the CEO is almost as much as
the contributions they receive and others spend an incredible amount on either employee
compensation or fundraising in comparison to what monies they give or use to
promote their cause. Before donating any monies to any charity find out what
percentage of your donation is actually going to make it to those in need. A
good place to start comparing Charities is here:
National
Charity Reports Index of the BBB
If your charity is not listed ask to see their annual report before
contributing. Make your donation go farther by donating directly to your local
therapy unit or better yet see what is needed and purchase the equipment and
give them that. Then there is no way your money can be diverted.
I do believe that national and local charities can be run
with the acumen of a great financial business. Making great amounts of money
that can be used for great needs but many charities do nothing more than pad the
pockets of those who run them so do your due-diligence before contributing any
money to any charity. I have found in my research that many spend all they
receive on their own salaries and little if any goes to those in need.
OK, lecture over.
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This site was begun in
December 2007. I have a long ways to go and would appreciate any help
you could offer.
Links are my number 1 priority right now. I want to
have a comprehensive listing of every State and County. I need you to
send me those links so that I can provide them for others.
My number 2 is your
stories. You do not need to get personal if you do not want, what is of
more interest is how you were able to achieve results and where you were
stonewalled. Especially helpful would be where you were able to find
specific information and how you were able to use that information. We learn through our mistakes but we also learn from
others. Help others avoid the pitfalls and find the answers through your
stories.
Number 3 is to get this site noticed
and to do that I need links to sites that have comparable content. If you have
such a site or know of any who do please place a link to this site. I am more
than happy to do a link exchange if you wish. Email this site to any and all in
your address book, perhaps one you send an email to will be willing to place a
link to this site on theirs.
Your stories will go far in helping others in avoiding your mistakes and
in doing what you have done to achieve success. There is also a rants
and raves section to just unload.
Thank You.
Within the pages of this site:
I have a lot on my plate and what
with the problems our daughter is facing and the needs of our family I do not
have the time to seek out and explore the available State and Local sites for
everywhere USA, so I need your help in sending me this information so that I may
post it for the benefit of all.
Though I have a page devoted to
Donation/Gifts I do not really expect any. I provide this web as a service to
everyone for free as I have had my fair share of bad experiences dealing with
governmental, private and medical organizations or individuals and have come to
the conclusion that if good information was available it would lessen the burden
and frustration of many when searching for information, advocacy, or just a
basic understanding of what is going on and what to expect.
In order to accomplish this I
created CPFSN.org as a place to find this information but also a place where we
can come together as parents and bitch about the system or rave about something
or some individual that has in someway improved or touched our lives. Rant & Raves is where you can post a story that
tells of your experience in as many as 5000 words (or there abouts) This is
about 8 pages in MS Word in font Times New Roman at font size 12. Or find answers
through posting in the Forums . Sorry I have taken the forums down due to lack
of interest. If any want them reinstated just email me. It is just a few minutes
to add the forums.
This site is new to the web and as
such does not have much exposure or traffic. If you would like to see this site
grow to be one of great use and importance to yourself and others who have a
child with disabilities then only you can make that happen. You need to place
links if you have a web presence or tell others of this site and use the free
forums and chat and post a story under Rants and Raves. You need to send me
those links so I can fill the informational sections to overflowing with relevant
links and information to help everyone find the answers to questions.
I truly want to provide as much help to parents of
children with Cerebral Palsy or other disabilities and also those Adults with disabilities
as I possibly can. I know how difficult I have found it coping with having a
child with Cerebral Palsy and navigating the system as well as my personal battles won and
lost. I have posted a page of Amber and another of us as her parents so
you may learn from what we have done. I have also posted and try to keep updated
a Blog of Amber and our struggles to provide her the care she deserves.
I am still fighting for my child and will most likely be doing so till I
die. Whatever I can do to make the process easier on others in my situation or
having to deal with Cerebral Palsy or other disabilities is of great importance to me.
At the same time you must know that
of paramount importance is the welfare of my personal family. I may not be able
to keep this site as up to date as I would like because of family
responsibilities and it is just a matter of where do my loyalties lay. Just as
with you or any parent, my primary responsibility is to my family. This is why I
need your help in finding those sites of merit and posting those stories that
will help others in finding direction and using the forums to help others.
Yes we are low income and we could use what help
we can get, but we expect nothing and this site will remain so long as I can afford
to keep it up. My desire is to help, not to take. But as I stated before, as a
parent my primary concern is my family. I would be remiss in my obligation to
them if I didn't at least post a link or 2 that might have an effect on our
standard of living and that of Amanda's family. You are under no obligation to
use any. I would however beseech you to send me those links and information and
post to the forums and rants and raves to help others.
The Rants and Raves should be on
topic. Having to deal with a disability or a problem or rave of the system or
your child's experience. The
forums should be a place where we can find answers and post questions though if
a topic was to stray a bit I would hope you would not go so far off topic that
those looking for information cannot find it. The place to talk of whatever you
want from model trains to the space race, politics to religion or about Cerebral
Palsy is in
the General Chat section of the Forums. I have not imposed many filters so please keep it civil as I really do
not want to censor anyone. I think a free and open exchange of ideas and the
ability to vent even if this means cursing should be allowed. PLEASE bear in
mind though that children have access to this web and as such a bit of self control
would be appreciated. And parents you are responsible for your children and
should be watching what they are doing on the web, whether it is reading the
information on this site or others. I will however delete posts if I find them
terribly offensive and what I expect is posted on the registration page but
really it boils down to NO Racism or hateful remarks, NO slanderous or direct
attacks of another user, NO sexual connotations or proposals and NO use of the
forums to promote your own agenda whether that be sales, other webs not
related in information on Cerebral Palsy or disabilities, newsletters, biz-ops or anything I
might or others might find a misuse of the privilege of using the free forums
and chat.
Our Stories which you may find helpful.
Links on the left.
We will provide you with our experiences and how we were able to
navigate the system. We will give you links and contacts to help you
achieve some success, we hope, in getting services for your children.
Nationwide
Resources
In addition to Local pages
we will try to provide links to resources throughout the nation. If
there are any in your area you wish posted send them to me and I will
try to get them listed as soon as I can. Join CPFSN as a Member and have
the link to resources in your area point to your site.
Local, State and Federal Resources
Washington State & Pierce County
We will tell you of Local, State and Federal resources we have
used and the results we were able to get. The difficulty we had and some
tips if you find you need to do the same. There will be also listed
sites we have not used or just informational sites.
We will not only tell you of our experiences but also of others we
have talked with and hopefully you will find within this information
something you can use to your Childs benefit.
But most importantly We will tell you to NEVER give up. That life
is a struggle with or without disabilities and you are your child's best
advocate. And in most cases their ONLY advocate. I know it is hard sometimes. I've come close to burning out
myself as has Stacy and many others we know. The constant battles can
leave you very cynical of the system and you have every right to be mad
as hell. The constant worry as new medical conditions present or as we
tire of facing the old can take a toll. But you don't have the luxury of giving up. Giving
up is tantamount to failure and failure places your child in jeopardy.
Your child's future is in your hands.
Their success or failure is dependant on your strength and ability to perform.
This site is all about helping you find answers to advocate for your child and
to find solace in a friend who knows what you are going through and might be
able to help relieve some of the emotional frustrations as well as give relevant
answers.
Sometimes it helps just to talk of
what is eating away at us and sometimes it is refreshing to talk of other things
to get our mind off the pressure cooker for awhile. Use the forums and chat to do both.
Sometimes we have a story to tell
that eats at us and we just want to let it out. Good or bad we just feel better
having been able to tell all. Anonymously if we must.
Share your
Story
If you have an experience you would like to share please do so. We
often learn through the experiences of others, the pitfalls and the
successes, and how we can avoid the first and achieve the latter. Within
your story may just be that golden nugget of information that will make
it easier for another to realize their goals.
With Your permission Your experience will be posted to a page so
others may read and perhaps find a nugget of information that will help
them.
See the page Share Your Story for more information.
This site is large and growing
larger all the time. I post as I get information. If you have not dumped your
temporary internet files since your last visit you may be pulling pages off
them. Hit the refresh button to view any new content.
I'm doing the best I
can to get all the relevant information for those with cerebral
palsy and other disabilities listed
and linked. You could be of great help if you could send me
links to really good informational sites dealing with advocacy,
information, disabled activities and any governmental or private
groups. (Please understand that if I list a private site without
a link exchange it is because I feel the site is so
informational that not to list it would be a disservice to those
in need. Any private site I feel has information that could be
found on already listed sites or that are easily found in a
search, I will not list without a link exchange. Also joining
CPFSN does not cost you anything but a conspicuous link on your
landing or home page of your site. In turn you will have your
site listed as the go to site for disabled information in your
area in the Members link page and the CP Family link page as
well as the State or County you are representing and the
disability links page. Only sites dealing with disabilities can join
( but any may
request a link exchange and have their link listed under Other
links or CP family links) I will try to get them (sites) posted in the proper categories
under Federal, State, County, City and Schools as well as event
calendars or activity sites like those listed under Pierce
County, Washington.
I would also like to
list military bases and the programs they might have. Just a
link to the base public entry pages would be helpful.
Thank You
Robert and Tami
OK. That is about it for the
introduction to this site. You can use any of the links on the left nav bar to
find information or read of our family or Amber.
Some information has been
gleaned from public domain sites and information. I have tried to credit
that information to those sites that have allowed me to use their
information. I would like to say that most all governmental sites are
public domain and some private sites will allow use of their material so
long as credit is given to them for the information. I have tried to use
as much of my own knowledge and experience as possible to fill the pages
of this site but in order to provide you with as much information as I
can I have used some found elsewhere. When I have done so I will have
credited the information to a specific site. I can take no
responsibility to the accuracy of that information.
Some information of
cerebral palsy was gleaned from the National Institute of Neurological
Disorders and Stroke 'NINDS'
Some Information of the IEP,
IDEA 2004 and the 504 plan was gleaned from the U.S. Department of
Education and the Office of Civil Rights. Some from local School
districts.
Much information has been
gleaned from my own searches for information and to list all would take
a book. I credit those who have let me use their information.
Most of the information on
this site is taken from my own years of research and visits with Doctors
and things I have learned through years of advocating for my daughter. I
cannot remember where each tidbit of information I know came from,
though I'm sure I have the therapists, doctors, school officials and a
myriad of other resources and people to thank for the knowledge I have.
If you have a web
presence we would appreciate your placing a link to our site on yours. If you
would care to do so here is our preferred link;
Cerebral Palsy Family Support Network
Dedicated to helping families find the support, resources and services they need.
And here is the code
for this link. Just copy and paste it to a simple text editor like notepad to
take out any garbage FrontPage put in and then paste it as you see it here to
your html.
<a href="http://www.cpfsn.org"><img
border="0" src="http://www.cpfsn.org/images/buttonsbglogosetc/cpfslogo.gif"
width="159" height="151" alt="The Cerebral Palsy Family
Support Network dedicated to helping support families with a Disabled Child and
or disabilities. Helping the disabled find resources and providing a place for
the disabled or their parents to congregate and have their questions
answered."></a><BR><b><font face="Arial,Helvetica"
color="#000000" size="4"><a href="http://www.cpfsn.org">Cerebral
Palsy Family Support
Network</a></font></b><BR><b><font face="Arial,Helvetica"
color="#FF0000" size="2"> Dedicated to helping families
find the support, resources and services they need.</font></b>
Thank You.
You may place a simple text link if you
wish.
Cerebral Palsy Family Support Network
Dedicated to helping families find the support, resources and services they need.
<b><font face="Arial,Helvetica" color="#000000" size="4"><a
href="http://www.cpfsn.org">Cerebral Palsy Family Support Network</a></font></b><BR><b><font
face="Arial,Helvetica" color="#FF0000" size="2"> Dedicated to helping families find the support, resources and services they need.</font></b>
Make a secure donation/gift through Paypal by clicking on the
link below:
Or you can make a donation manually by following one of the steps below.
Donations/Gifts are graciously accepted, Just log on to www.Paypal.com , Click "Send
Money" tab and follow the instructions to send money from an existing
Paypal account or by any major Credit Card. Use the email address below to
make a Donations/Gifts on Paypal.
If you do not see an email address it is because you need to enable
javascripts. The email is in javascript to foil the spambots.
You can also mail a Donation/Gift to
Tami Taormina
P.O. Box 4463
Spanaway, WA. 98387
Remember to follow the ‘GoldenRule’ and (life, fate, karma, God) may just reward you with a bit more happy days than sad ones.
Thanks
Robert and Tami
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 and the disabilities links 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. Your site does not have to be about any disability so long as you or your child has a disability.
If you do not have a disability or a child with a disability but have a site devoted to any disability you can have a reciprocal link placed on the disability links page
If you do not have a disability or have a site devoted to any disability you can still have a reciprocating link placed on the Non-CP other 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 Title and information as well as the URL 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.
To speed up the process have a link to my site on yours and send me the URL. Our preferred links can be found on any of our links pages (left nav-bar)
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2007
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