Cerebral Palsy Family Support Network TM
Dedicated to helping families find the support services they need.

Cerebral Palsy Family Support TM

Neither Amanda's family nor Ambers has the funds to do more that put a roof over their heads and food on the table. An occasional trip to the food bank helps out considerably. A donation at this time would be a gift to us. But in time we hope to have in place non-profit status so that we can help those in our community through support, services and events for the disabled. This is our ultimate goal and we would ask your support.


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?

Specific Neurological Disorders
Many of these do not fall under the heading of CP but are disabilities nonetheless.

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
Also a bit about our (current Nov 08) personal battle for Amber

FORUMS (BBS)
Registration is required but please use the forums to ask and receive answers as well as post your needs or what help you can provide

LIVE CHAT

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

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.

CP FAMILY LINKS
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
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

 

DONATIONS/GIFTS 

        We have not yet applied for non-profit status, so any Donation would be a gift to us. The IRS allows you to gift up to $10,000.00 to any individual without penalties. I do not expect any to do so, at least not till we have non-profit status and the Donation is tax deductible and programs are in place to help those in need. If any knows how to set up a non-profit in Pierce County, WA. and would be willing to do so for free we would really appreciate the help. 

Till we get our own house in order we can do little but supply information to others but we would like to be able to provide community meetings for the disabled and activities much like WA-PAVE Inclusion program does as well as help those in desperate need. However due to our low income status we can do little more than we have and continue to do. Your help would be appreciated.

I hope you do not consider me selfish but we need to get our feet under us first then I would like to get non-profit status and with the help of local churches provide meeting places for the disabled and activities for disabled children. A pipe dream for now but something we are working toward.

I would like to model what we provide somewhat the same as WA-PAVE Inclusion Program of which my daughter is a member and goes to most meetings. The problem is most meetings that actually have a lot to offer are held in Gig Harbor, WA. Which is an hour drive away. We take Amber anyway but many more, local to us, either cannot afford the time or gas and so do not participate.

      Remember anything you send would be considered a gift, as we do not have non-profit status. Also anything you send would be first used to support our family before the community at large. We are not looking to get rich. In fact quite the contrary. We just want to be able to afford those items Amber needs and get out of poverty before we tackle providing for the community in other than volunteer activities we already do and this website.

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 

     Though we have done and still do community service and Stacy ( Amanda's mom. The mother of the girl pictured on the left of the header pic) sponsors a parents support group it is not enough to get non-profit status.

      There has to be in place a legal documentation of where all monies go and we cannot personally profit from any Donations except to pay expenses. Currently we could not afford a Lawyer to draw up these documents and as things are, we are just as much in need as any we would like to help. The support group meets in one of the groups homes. (Crowded) We would like to be able to rent space but cannot afford it.

      If you've read our about us pages you will have undoubtedly seen that currently we are in need and a Gift of $5.00 or $20.00 would not be to hard for any to do. I put as much in the bell-ringers bucket every Christmas without any undue hardship. Any Gift of  money would be used to help us provide for our families. We are low income but can receive no State perks like food stamps or help with utility bills and the like because we have assets in the form of rentals. They say sell the assets and we will help but to do so would only serve to lessen our income to the point of being below Federal Poverty Level and yet we will still have assets so would not receive any help. In order for us to qualify we would have to sell everything and then blow the money so we are indigent. Only then would the government help us out. I ask you is it fair to our children to throw away their inheritance just so we could receive State aide? Now we are able to make ends meet (barely) but if we lost any more income we would not. 

As it stands right now as of this update Oct 2008 Amber is close to needing to have full use of a wheelchair, I was able to get a power chair off craigslist for use at school. Amber could not use a regular wheelchair unless someone pushed her because of the left hemiplegia affecting her left arm/hand. Though our home is a rambler it will still need some disabled accommodations like a ramp and wider interior doors and perhaps lowered countertops in some areas. All of which we cannot afford.

 Also we are having to put air ride suspension under the car in order to carry the weight of the chair. We are currently (Nov 3, 08 ) looking into having DDD pay for some of this as after paying property taxes and insurance and for the chair and installing a hitch to hold the carrier we are broke.

      I guess what I'm saying is that neither Amanda's family nor Ambers has the funds to do more that put a roof over their heads and food on the table. An occasional trip to the food bank helps out considerably. A donation at this time would be a gift to us. But in time we hope to have in place non-profit status so that we can help those in our community through support, services and events for the disabled. This is our ultimate goal and we would ask your support.

      Read the About Us pages and Ambers Blog and see if you don't agree that we are in need. Anything you can give would be very much appreciated. 

     Once we pull out of the needy doldrums we currently find ourselves in, we hope to be able to apply for non-profit status so that we can help others in our community. We already do through community service we volunteer for and Stacy's support groups she hosts at no charge and even this website but to do more we need more and to get more we need non-profit status. If any know how to go about setting this up we would appreciate the help. We need to tend to our own immediate needs but after doing so  We would like to get non-profit status and collect Donations to help the disabled in our community. If any out there know how to set up a non-profit and would be willing to do so for free we would be very appreciative.

      If you feel a gift is not possible then  I would encourage you to visit www.vintageslips4u.com This is a site I have up to sell vintage clothing. Mostly intimates but some designer clothing as well and on the everything else page a lot of just stuff. Most of what you see as sold, was sold on Ebay for a pittance of what we would have liked under the ebay names Tamidesign and Tamicraft. We use the website to host our pics, to avoid Ebays high picture hosting services, but sell off the site as well. Also most  of what you see is on consignment but we make a percentage of the sale. To date (Over the last 2 years) we have made maybe $200.00 off the site and 3 times that off Ebay. It pays for the web hosting service and most expenses but there is no profit. My 2006 returns show a $3000.00 loss on our business ventures. But the wife is still out there trying her best to help out.

     I would be willing to email you a copy of my tax return with the account and SSN numbers blocked out. In 2006 we made $21,300.00 adjusted Gross. in 2007 it was $23,400.00 As this part of the Country is quite a bit more expensive to live in than others I think we are very close to that National Average Poverty Level. I'm not ashamed to admit we need help but am proud of the fact that so far we have been able to provide for our family without it.

      Also as I stated earlier the IRS allows gifts to any individual so if you find yourself in a position to give more let us know and we can send you the full names of everyone involved so you may do so without penalty from the IRS. And once we are out of the needy doldrums I will get non-profit status so we can help others in our community with cash and services instead of just our time. We hope to be able to provide space for the meetings and for activities for the kids. We also hope to provide for the local CP community and the CP community at large in some way.

Thank you.

***********************

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 

 

     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.

 

All email addresses are in javascript you need to have scripts enabled to see them. 

   

 

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