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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.
At near the other end of the spectrum you will find Amber.
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 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.
*******************************************
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.
OK, lecture over.
***************************************
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.
And finally use the forums
and chat to get and give help. We are a community of the disabled or
parents of a disabled child and we are the only ones who can really
relate to what is going on in our lives. Please let us help each other
through dialogue in the forums and chat.
Along the same theme posting
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.
So that
others might find the information I have collected here please place a
link to this site from yours if you have a website or blog. Tell
your support group of this site and use the forums to communicate.
Thank You.
Within the pages of this site:
Hopefully, with time and the aide of
readers like you, a fairly complete listing of available programs, Federal,
State, Local and Private for everyone to use and benefit from. Located under the
heading CP LINKS on the left navbar I hope to have a
fairly large listing of sites that will be of use to any seeking information
and/or advocacy for children who have Cerebral Palsy. You would just drill down through the Federal, State and Local
level to find relevant information and/or a member site that would contain this
information.
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 or find an outlet or a friend to engage in
conversation in the Chat.
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, and
especially the question most asked, "What do I do?"
As this site grows I will attempt to
keep up and make whatever changes need to be made or implement any suggestions
you make that have merit. 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 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 and chat to help others.
Yes I have placed personal links on
this site that go to other sites I have that I use to make money. (Ha, better to
say Try to. So far we are in the hole.) But I stress this very strongly:
"You have no obligation to use any of those links nor to donate anything
but time and information!" Yes we are low income and we could use what help
we can get but we expect none 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 and use the chat 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 or on the Chat itself (if working as I
have been having some problems with it). 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 or chat 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.
I live in Pierce County Washington
and before I created a local chapter website I created a local links page. This
page still exists here:
Local Links
Pierce County
But since I have created a local
chapter web site Pierce County residents will find
more current and useful information here:
*****Update! I am finding I do not
have the time to keep both sites up to date so most all information will be
posted here and CPfamily.org is no longer being updated. There may still be some
links on CPfamily that I have not yet transferred here.*****
www.cpfamily.org
This is my sister site or one could
say my Member site devoted to Pierce County Washington. We will strive to do our best to tell you of
Local Contacts in
Pierce County that may be of use to you in your search for answers or
your search for advocacy help. So as not to be overly redundant some sites
posted here on CPFSN are not on CPFamily so check both sites.
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.
You will have the option of having your name, email, address and
phone# posted as well. Totally optional but in some cases you may want
to at least post an email so others might talk with you of your
experiences and how they can benefit from your experience. I will place
the email in javascript so spambots cannot find it but you may still
receive spam from degenerates who farm emails just to spam them. I have
had my email on the contact us page for some time and have yet to be
spammed but I have received spam from other sites I have so I know
people are farming them; OR use the handle you use in the forums and chat so you can be found if you want to
remain even more anonymous. This is totally optional and unless you expressly give me permission
to post this information I will NOT post it.
Forums (BBS)
Where you can post Questions and hopefully receive answers.
Live Chat
Where you can enter a public Chat Room or a private Chat to talk
with others who share your concerns and/or experiences. A GREAT!!!
way to come together as a community to help each other and to vent. Also
a place to leave CP behind for awhile and talk of other interests.
Simple net-etiquette rules apply in both the Forums and the Chat.
You basically police yourselves.
The only requirement is registration
so I have a means to ban users who abuse the system. I had to delete many posts, before I required registration, as some adolescent or immature adult
posted sexual graffiti of no significance other than to harass. Now with
registration I can ban that user so we never have to deal
with them again. I do not place many filters and do not edit content unless I
find it violates the simple rules I have or I get complaints and find them warranted. Spam
bots are a problem and have inundated the forums so I have initiated a question
process to weed out the bots however I still must manually delete those who
manually abuse the system.
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. Only sites dealing with disabilities can join but any may
request a link exchange.) 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. Below this point the site
becomes more commercial in that it posts affiliate links a donation section and
more ads as well as our preferred link exchange html. You need not go further if
you have no interest in these things.
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.
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.
Affiliate Links
OK. This site is about
informing you of Governmental, and private sites that may be of use to you
in your search for information and advocacy for your child. It also is of
benefit to any disabled person. There are two main themes of this site and
they are education and health. There are some pages that are about you and
some of our own trials by fire. When deciding what affiliate to link to, I
have tried to find those as related to these categories as possible but so
far have been unable to find any true disability links. So most are off topic or for products not specifically designed
for the disabled.
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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
I’d like to apologize for the way the site is set up. I know it is not so easy to navigate as others might be. And is most definitely harder on the eyes. But the old adage “All that Glitters is Not Gold” holds true when it comes to websites. I have found several that look snazzy and make me drool but when I look at the content I find there is little to none. They are just fronts for links pages. You click on these links and make the site owner money. But you have lost time and were in effect hoodwinked by these flashy pages. Your click through has made the site owner money but you are still searching for information. I place ads on my sites but I also place relevant content so that you may not have to click through. The ads make me money but it is the content you are interested in. If I serve it up rather ‘Plain Jane’ isn’t it better to get what your looking for than be entertained or worse have to click through a links site with no content?
I guess we all have differing opinions on what makes a site worthwhile. For some it may be entertainment or a flashy look. For others they may not mind having been hoodwinked into a links only site to make the site owner money. Personally I would rather a content rich site where I might find useful information and if I choose to leave the page through an advertisement ( that may make the site owner some money) it is my choice, not one I was forced to make. Often when I hit a links only site I just back out rather than click through, why should I make a person money for having tricked me? Though there may be times when it is links that I am looking for. Links to information I can use. Though if this is the case the links (most often) are to websites that are not compensated, such as my links to disability pages on
http://www.cpfsn.org . Sure there are some ads but most links are to pages that hold information that the user is looking for and I am in no way compensated for placing these links nor do I ask for a link exchange for providing them.
As to the look of my sites:
1st.
I do not know CSS and do all my sites in plain old html which is laborious and time consuming, and though I could easily make them fancy like those who have buttons, special effects, scripts and flash pages these are time consuming and take more time to load which makes them nice for those on broadband but dialup users are left waiting for page loads. The less graphics, effects and scripts, the faster the load time.
I believe that people would rather have good content than snazzy pages.
When I made a site for my daughters Girl Scout Troop and another for my
son's Cub Scout Troop some years back I had things flying about and
twirling around and things fading in and out and it was cool. The kids
loved it but if you were on dial up some pages took 10 minutes to load.
The page most liked, had music and Tweety swinging and talking of how he
"Saw a putty cat" Some told me that page took nearly a half hour
to load on dial-up. I try now to make pages sparse in the way of Pics and graphics
so you do not have to wait. If any page is taking to long to load let me
know and I will break it into sections.
2nd.
Search engines categorize by what they read on the site. Typically they read the text as it appears in the html. I build my pages with tables, having a left nav-bar, a center content section and a right advertising section. Search engines therefore read the
heading first then the left nav-bar. If all they see is links and the text of these links are to pages with different content they do not categorize the page correctly or not at all. In order for the Search to know what the page is about I have to place a couple lines of text about the page in the left nav-bar, at the beginning of the table.
Sometimes this same text is repeated in the content section. I apologize
for any inconvenience.
3rd.
I place text in the links section so that you the user can know where the link may take you. It avoids your having to click links to pages you have no interest in, but it also clutters the links section and makes it more drawn out than it needs to be. I tried having a just links left-nav bar with buttons some years back and found it clean and neat but also found in my stats that many pages saw views but that few stayed on them long. I assumed that they had found pages that were not of interest and moved on. Since implementing a link and text format I find less page views but a longer stay on a page as the user is finding the information they are seeking faster. Some links do not require text as the link itself is pretty self-explanatory.
4th .
People want ‘instant gratification’ that is to say they want what they are looking for handed to them on a silver platter. They do not want to have to read much or wade through a lot of information that has no bearing on what they are looking for. I have two choices. Either make a short simple page on every single subject and satisfy the general user who wants instant gratification, or place several content related articles on single pages and let the reader have to read a bit of text to find that pearl they are looking for. Well In some cases I have done the former and in some the latter. Why? Well for some subjects they are best served alone. They express an opinion or some content that should not be blended with any other such as your stories, comments, or tips. However other pages can and should be blended as they have interlacing content such as the IEP, 504plan, and IDEA 2004 on
www.CPFSN.org . I do separate out the actual programs to some extent but I also combine so that a reader may see the way these programs interact.
So in closing I hope you will forgive the mess and I hope you have found information and/or links to pages that have been of help.
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
Now 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. Also you agree that your use of
any links you may find on this site are provided as a free service and are
not in anyway connected to www.tamicraft.com
, www.cpfsn.org , www.vintageslips4u.com , www.ourfreepowermall.com
or www.cpfamily.org or any
owners, heirs, assigns or affiliates and that we (collectively and separately)
are not liable for ANY damages caused by the use of the information or use
of these links. If you do not agree to any of
these terms then do not use this site.
You may find advertisements on
this site, The content of which is not within my
control and I am not responsible for their actions.
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2007
-2008