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ABOUT US AMBER’S PARENTS
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.
AMBERS STORY
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.
Blog of Amber and Family 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.
Cerebral Palsy Glossary
Just what it says a glossary of most common
used terms and words when talking of Cerebral Palsy.
CONTACT US
How to get hold of the principle parties to this
website. Whether by email, snail mail or phone.
CPLINKS
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.
CP
FAMILY LINKS
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.
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..
DONATIONS/GIFTS
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.
FEDERAL LINKS
These are Links to Government agencies as well as
Links to National Private Organizations. They may provide information
and/or Advocacy
FIGHTING
THE SYSTEM (AMBER)
Battles fought : Won and lost. By Amber's parents on
her behalf.
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.
HOMEPAGE
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&
Title 1 IDEA as written
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.
IEP
overview
Taken
directly from the U.S. Education site with maybe some opinions thrown
in.
JOIN OUR NETWORK
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.
LOCAL
PIERCE COUNTY LINKS
Links to Government and Private Organizations
within Pierce County Washington that
may provide useful information and advocacy.
Making Money Online (or not)
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
MEMBER PAGES
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.
OCCUPATIONAL
THERAPY
A bit of my, or rather Ambers experience with
Occupational Therapy and some general questions answered.
OTHER LINKS PAGE
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
PIERCE COUNTY EVENTS
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.
PHYSICAL THERAPY
A bit of Amber's experience with physical therapy
and some general questions answered. Also how to find free therapy.
SITEMAP
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
Many of these do not fall under the
heading of CP but are disabilities nonetheless.
A long list of disorders (477) and links to pages
with relevant information of each.
SPEECH THERAPY
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.
SUCCESS
RAVES
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.
THE LAWSUIT
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.
TREATMENT
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.
VENTING
RANTS
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
The actual laws here in Washington
State. Also our (current) personal battle for Amber
WASHINGTON
STATE LINKS
Links to State Government and Statewide Private
Organizations that may provide useful information and advocacy.
WHAT IS CP
A short explanation of Cerebral Palsy. For more
information follow the links or talk with your physician.
WHY THIS SITE?
The reason I thought of doing this site and why I
felt it something I had to do.
YOUR STORIES
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.
504 plan
& IDEA Q&A
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:
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 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:
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
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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