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Cerebral Palsy Family Support TM |
Cerebral Palsy
Family Support Network TM
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Cerebral Palsy Family Support TM |
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Basically the same as the Home page but with a bit more info on this sites pages. Also all pages except The State and County pages and Your Stories are here. Your stories are linked through the relevant pages.Rants and Raves and the State and Federal are linked through the CP Links page. 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 pageThe CP Links Page is where you will find most Federal, State and local County pages. WHAT IS CP How it is essential to maintain range of motion How it is essential to maintain quality of life What I know through my experience By far not even close to what you should know and Orthotics Again what I know through experience Much more can be had searching the net or talking with doctors and therapists CP LINKS Cerebral Palsy Glossary More Information of CP provided by NINDS Specific Neurological
Disorders My take on the IEP,
IDEA 2004 (Public Law 94-142 & Public Law 101-476), and the 504 plan. IEP overview 504 plan & IDEA Q&A
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& Washington State Chapter 392-172 WAC
SPED special education and the IEP FORUMS (BBS)
MEMBER PAGES
Pierce County Events
AMBER'S STORY 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. 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 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 with me in trying to educate the public of CP and other disabilities What motivated me to build this site 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) Other sites I have or to be more precise the wife has and I take care of.
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SiteMap
OK: Basically the same as the Home page but with a bit more info on this sites pages. Also all pages except Your Stories and all the States and Counties are here. Your stories, States, and Counties are linked through the relevant pages. IE: CPLinks has Federal link to federal page and State links. States have State links and list of Counties. Washington Counties have city and local links, and Rants and Raves has your stories. A short synopsis of our lives since Amber has come into it. The challenges we have had to face. The changes we have had to make and the ongoing sacrifices we continue to make. Our hopes and goals for the future. The personal successes we have celebrated and the failures we have had to endure. Our situation as a family and what we would like to see for our future. Perhaps acknowledgments of people and organizations that have been of help and those with whom we've had to fight and those battles we have won or lost. Just a bit about Amber. How she came to have Cerebral Palsy. The effect it has had on her life to date and where she might be heading. Her accomplishments to date and goals for the future. Her likes and dislikes and what she wants, needs or wishes for her future or what we would like to see she receive, as her parents. As Amber is capable of speaking for herself perhaps she will grace this web with a page she has written of what she aspires to. Beginning January of 2008 I will try to keep updated the highlights of what is happening in Amber's life and those major events of the family that impact on Amber. Just what it says a glossary of most common used terms and words when talking of Cerebral Palsy. How to get hold of the principle parties to this website. Whether by email, snail mail or phone. To Federal, State, County, In Washington State; 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 It may take me years to get all the links so I would appreciate any help and notification of broken links.
Links categorized as Local, State, and Federal as well as private institutions or advocacy groups. Among these links you will find contacts we have made that may be of use to you. The value of each link cannot really be determined by us, as each has their own reason for looking. Some may want to know of legal issues others of medical and still others of school. How do we say this site is better than another? But near each link we have visited will give a short synopsis of what you may find there to make it easier to choose which link to follow. Link Pages to Sites of People with CP or having Children who have CP. These would be links to personal or commercial sites owned by persons having CP or having Children with CP. Banners allowed and up to 4 lines text. Let us try to support those with Disabilities by visiting their sites. How to go about sending a Donation/Gift to us through Paypal or the mail. What that Gift will be used for and "IF" we get non-profit status what we intend to do with the monies we receive. These are Links to Government agencies as well as Links to National Private Organizations. They may provide information and/or Advocacy Battles fought : Won and lost. By Amber's parents on her behalf. A place to post and have questions answered. One could use it to learn of what others have had to say of specific issues. I would suggest you post in the Forums Questions and Answers. Guidelines for Posting an Article This will actually take you to our Tamicraft site but the information is valid for all our sites. This page will contain the general TOS for posting articles and a basic primer on getting your articles noticed by the use of meta tag keywords and descriptions. What self-serving posts are allowed and what will be deleted or not used. You can benefit yourself and your website traffic by writing and posting articles but you must stay within the strict guidelines as written and any self-serving URL's or Emails must only appear in the signature after the article. The index.htm page that has most all this information. It will have most all the links there as well as postings of any new information that we feel is appropriate. I would hope you bookmark the home page as it is the duly noted entrance to this site. Should there be any significant changes throughout this web they most likely will be posted there. IDEA 2004
summary& A summary from the U.S. Dept of Education and the actual enacted law. Boring and difficult to get through and you would do better looking at some of the other pages that deal with this subject. Taken directly from the U.S. Education site with maybe some opinions thrown in. Join us as we try to help those in need by providing information and whatever assistance we can. We are a community of the Disabled and we need to try to help each other cause we know few others will. We all have questions, complaints, or are in need of answers. The Forums are a good place to post questions and perhaps a better place to get answers than live chat, but much of the time we want to talk with someone who has been where we are, or expect to be. Links to Government and Private Organizations within Pierce County Washington that may provide useful information and advocacy. I need to preface this by saying at first I thought this belonged on one of my commercial sites. But upon thinking further of it I decided it would be best served here. Most disabled have the ability to work. The job they get is usually dependant on their abilities or lack thereof. With a home based business many more could join the workforce and/or supplement their income. As most disabled are paid low wages because they are incapable of doing a lot of the requirements of higher paid jobs, I felt this page belonged here. Even if it is just to supplement an income it is still something suitable for most disabled. Working from home online could make a great difference in their lives These would be links to websites that have joined the Cerebral Palsy Family Support Network. The site or blog should deal with some disability. I am hoping that eventually many will put up sites in their local area to post notices, provide support, have live chat and a bulletin board service (Forums). As well as whatever else they can do to support the local population living with CP. Currently you may join by merely posting a link to us on a prominent page on your site. More Information of CP provided by NINDS A fairly complete information section provided by our government on the causes, treatments, associated problems and prognosis of Cerebral Palsy. More ridged in its terminology and substance than my pages, but factual and more informative. My take on the IEP, IDEA 2004, and the 504 plan. My personal views. Nothing exciting as I have my opinions posted everywhere, but it may give you some insight you may not have thought of or a direction you might want to explore. A bit of my, or rather Ambers experience with Occupational Therapy and some general questions answered. This would be links to sites that have nothing to do with CP. They are merely trying to generate traffic to their site as I am to mine. A more precise word would have been reciprocating links as I place a link to their site if they place a link to mine. You may find a quick link to a place of interest here. Parent & Educator Guide of 504 plan concepts and real life accommodations. Drafted by the OSPI and 5 Puget Sound area Schools but would be a valuable asset to any fighting for their child's 504 accommodations anywhere U.S.A. If your child is on a 504 plan or you think they should be I would recommend that you read and study this page with care and great emphasis of those accommodations suggested in Appendix E If you know of any local events either specifically designed for the disabled or events that would be of interest to disabled persons Or events where the disabled get a discount please send me the information. What the event is, place, date, time, directions and any other pertinent information. A bit of Amber's experience with physical therapy and some general questions answered. Also how to find free therapy. Here you are now and this is just a place where I can explain what you will find on most all the other pages. Specific Neurological
Disorders A long list of disorders and links to pages with relevant information of each. Speech therapy is broken into two parts. One is the formation of sounds that are recognizable to produce words this would be speech therapy and the other is the actual using of words in a way that makes sense called language therapy. A person with CP could suffer one or both. The determining factor is the extent of the disability. Here we will consider speech therapy as I have little knowledge of language therapy. You should enter through the YOUR STORY page as you will find useful information there. This area will have links to stories you send me about how you were able to succeed in some goal or a rave of something that happened in your life or how you may have benefited in some way. Just a bit about the lawsuit we filed. There was a gag order placed on us so we cannot talk of what Hospital or the amount of the settlement. (Not nearly enough) A bit of Washington States laws and how you cannot sue for damages above actual lifetime expenses. Though as I write this, a bill has been introduced to allow up to three times costs. I do not know if it will pass or not. A short bit about treatment of some ailments we have come across. We would advise you to follow the links to more comprehensive material based on your specific needs. But before implementing any treatment noted here or on any website you should first consult with your Physician. You should enter through the YOUR STORY page as you will find useful information there. This area will have links to stories you send me about gripes you have or things gone wrong. Cursing is allowed but please lets not go overboard. I assume no liability for the opinions you express they are yours and yours alone. Washington State Chapter 392-172 WAC
SPED special education and the IEP Links to State Government and Statewide Private Organizations that may provide useful information and advocacy. A short explanation of Cerebral Palsy. For more information follow the links or talk with your physician. The reason I thought of doing this site and why I felt it something I had to do. Perhaps will be my favorite part of this website. This is where you can post anything you want so long as it relates in some way to Cerebral Palsy or any disability especially of interest would be those stories that relate to children and how you were able to get needed accommodations or overcome obstacles. You have two forums here. Venting or Rants which is just your bitching of what may have happened to you or your child and Successes or Raves where you can tell of goals achieved and how you accomplished them. People or organizations that have been of great help to you. We learn by the experiences of others. Those who post here are sharing their experience and in doing so are giving us an insight as to what to look out for and how to navigate the system or how not to. You just need to send me an email with what you want to say and let me know if you want any contact information posted or not. Perhaps your chat and/or forum name so others can contact you there and talk of your experiences. You may post anonymously if you wish. You do need to tell me if you want it under Venting/Rants or Success/Raves. I will create a page for each post I receive and your story will be out there for all to read and some to take advise from. You can post self-serving links in your signature file if you so choose but not in the content of your story. More info on the YOUR STORIES page. Q & A Taken from the pages of the Office of Civil Rights. An explanation of what is an accommodation vs. a modification Also a list of accommodations and modifications that are permissible under the 504 plan and/or the IEP and Special Education. More can be found on the Parent & Educator Guide of 504 That's it for now. I'm sure I will add more as time permits. Some pages have more information than others and some information may be repeated or expanded on in various pages. I try to keep it simple but sometimes dealing with a disability is not a simple thing. Thank you If you have a web presence we would appreciate your placing a link to our site on yours. This is our preferred link:
And here is the code for this link. Just copy and paste it to a simple text editor like notepad to remove the garbage FrontPage puts in, then paste it to the html of your site. <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> You can place a simple text link if you prefer.
Make a secure donation/gift through Paypal by clicking on the link 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 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.
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