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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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Devoted to helping families cope with the
system and the affliction of Cerebral Palsy. I'd be lying if I didn't
say I hoped to make some money off this site as my family is in need and
so is Amanda's, but whether we make a dime or I lose the cost of web hosting
charges it really doesn't matter. This site would be here anyway. I have
had it with the Bureaucracy that we call the System. And I
need to feel as if I am doing something about it and since my physical
health is not so good I decided to help through providing this site as a
means for people who have CP, and those who have Children with Cerebral
Palsy, to get and exchange information. Here we can get together through the Chat or get questions
answered through the Forums (BBS) or just post our stories so that
others may learn the do's and don'ts of navigating the System or just
coping with the Disabilities.
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. My attempt to clarify CP you may find the information provided by NINDS is more specific and detailed There are many different treatments and I only name those I am familiar withHow 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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Cerebral Palsy and finding Information and Advocacy
WHY THIS SITE?Primarily this was an idea I've had for a long time but it didn't really get me motivated till I met Amanda and saw the difficulties that Amanda's parents were having. I had of course seen other children going to therapy that had it worse off than Amber and my heart went out to them as I counted myself lucky, It could have been worse. But in talking with Stacy and Brian I found my difficulties in getting help for my daughter small in comparison and yet they were huge to me. I found that though I made less money than they, that they were still in great need as what they made was not enough to provide what they felt they needed. That caring for Amanda was a full time job that they realized would be something they would have to do the rest of their lives. And though they bitched about this and that, just as I do they never once said they wanted to just give up. I understood that. Bitch as we might we are responsible for our children and as parents we can't just give up. No matter how difficult it may be. Though in talking with them and listening to their bitches I found myself listening to some of the same things I would have said and agreeing more often than not that there was just not enough support available or if there was it was buried so deep one would spend years trying to uncover it. I decided then and there that I was going to make a difference and the only way I knew how to accomplish that was this. A website devoted to helping families cope with the system and the affliction of Cerebral Palsy. I'd be lying if I didn't say I hoped to make some money off this site as my family is in need and so is Amanda's, but whether we make a dime or I lose the cost of web hosting charges it really doesn't matter. This site would be here anyway. I have had it with the Bureaucracy that we call the System. And I need to feel as if I am doing something about it and since my physical health is not so good I decided to help through providing this site as a means for people who have CP, and those who have Children with Cerebral Palsy, to get and exchange information. Here we can get together through the Chat or get questions answered through the Forums (BBS) or just post our stories so that others may learn the do's and don'ts of navigating the System or just coping with the Disabilities. I know it is not much but it is a start. Most of what I've learned about, I've learned through others and not off some web page or through some Doctor. Yes I get the technical stuff off the web but the real gems I get from talking with people who have been through it themselves. Also I am not one to go to a meeting and spill my guts about my feelings but I can write about them and post them for all to read and, for me, this is an easier way for me to speak out and be heard. Stacy has a support group she has started, and they meet in person and talk or bitch of what is new and recount what is old but they have to hold whatever it is in till the next meeting. Why not a Chat room so they can talk whenever it is convenient for them? They or someone, anyone has questions they need answers to and yet try as they might they just can't seem to find it on the web, why not post it in the Forums and see if any might know the answer? We all have stories to tell. Some of great happiness and some of great sorrow. Some of difficulties we have had to overcome and some of triumphs where we have succeeded. Rants and Raves I've heard it called or Venting and Successes would be another way to put it. Though our stories others might learn how to overcome obstacles or at the least avoid the pitfalls or take solace that we are not alone. So why not post those stories so that others may share that experience? I don't know all the places that help is available as I'm sure you don't but if we pool our resources we can fill the links pages with many more than just one of us could alone. I've placed those I am aware of, now send me yours and in time we will have a library of links for everyone to find the information they need. If you are willing to do more than bitch about things and want to get involved then here is your chance. Start your own CP chapter in the City, County or State you live in. Whether you get a bit of web space or just some free blog space you place a link to this site and I will post yours as the go to site in your area for CP information. Together we CAN make a difference and if you do not have a web presence and do not want one then just send me those stories and links and I will post them here.There should be a link to the web host I use whose low cost service is among the cheapest around. It is also an affiliate program in that if you sign up through that link I build points that can be converted to cash to pay for this web site. My ID# is tamicraft . Please be sure it is in the sign up so I get credit if you decide to purchase web-hosting through them. The small package is all you will ever need and if you do find you want more you can always upgrade. I know they offer a Windows based hosting plan but know nothing about it. I know I have windows on my PC and I use MS FrontPage as my HTML editor. I know you enable Front Page extensions in the Linux based plan and you upload through the FrontPage publish wizard. I've had no problems doing this and do not know what the Windows plan offers over the Linux plan. I just know it costs more. At any rate the cheap Linux plan is sufficient and you would be able to have 2 Domains with more space than you will most likely ever use. There will be a banner link on the sidebar to the cheap plan and a link to every plan at the bottom of every page.We are a community and we should support each other. Even if that support is only in the information we can provide. So and make a difference in others lives. Speaking of community some of us having to deal with CP in our lives have online personal pages and some even online businesses. Why not try to support each other and take the time to post a link and visit a few. I can't guarantee that these people who post are truly people who have Cerebral Palsy or that a child of theirs has CP. I have to take their word for it just as you do. There is just no way to verify it but I would hope that those who would take advantage would be few. I can't endorse any link other than my own and so I caution you to be wary and observe some simple common sense practices about giving out personal information online. But as a community we can and should support each other. If you haven't already guessed I am not a computer geek though some may beg to differ, especially those who call me all the time when they have computer problems. I do not know how to do CSS nor PHP nor any other computer language except a bit of HTML. I do not use templates as I find them difficult to work within and difficult to modify. I build a simple easy to tweak page and go from there. It is not a professional website in looks or navigation but it is here and hopefully it will make a difference in someone's life. And if it does that ; it was worth the effort.Thanks Robert I might have more to say in time but right now I just want to get this site up and working so people have a place to go.
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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