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

Cerebral Palsy Family Support TM

First one must remember that Cerebral Palsy CANNOT be cured. But there are a myriad of ways its afflictions can be controlled and even minimized. I will try to tell you of those I have personally seen to have some validity and others I've heard of. But the one thing that is most important is to catch it early. Early diagnosis is key to effective cerebral palsy treatment and therapies that may increase quality of life and standard of living. Some disability treatments will be temporary and some may last a lifetime. Many will undergo changes as the Child grows to adulthood but the constant will be that any treatment whether broad spectrum or specialized will be a necessity for most with Cerebral Palsy or other physical and mental disabilities for the rest of their natural lives.


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

 

Treatment 

of CP

Cerebral Palsy

    As stated on other pages,  I'm no Doctor and you should consult one before implementing anything I say here. But having a child with Cerebral Palsy myself, I've done my homework and this is what I know.

PHYSICAL THERAPY    

OCCUPATIONAL THERAPY   

SPEECH THERAPY   

MEDICATIONS  ~  ORTHOTICS     

     Cerebral Palsy Is a catch all phrase for a myriad of conditions. 'See what is CP' But there are some universal things that can be done. Others are more specific to the affliction one has.

      First one must remember that CP CANNOT be cured. But there are a myriad of ways its afflictions can be controlled and even minimized. I will try to tell you of those I have personally seen to have some validity and others I've heard of. But the one thing that is most important is to catch it early. Early diagnosis is key to effective treatment and therapies that may increase quality of life and standard of living. Some treatments will be temporary and some may last a lifetime. Many will undergo changes as the Child grows to adulthood but the constant will be that treatment whether broad spectrum or specialized will be a necessity for most with Cerebral Palsy or other physical and mental disabilities for the rest of their natural lives.

     Many of us do not know we have a child with CP till their development shows serious signs of being retarded in some way. Most children with CP are not so afflicted that it is obvious till they grow older. Some though are severely handicapped and these are diagnosed early.

      Still there are things you can do early in your child's life that can help them greatly even if they do not have CP. Range of motion is one that would do no harm to any baby but would be essential for a disabled child. Also providing the baby with a variety of sights, sounds, smells and tastes to encourage development of those senses. We are like sponges at such an early age and just soak up all this information. In time we may discard that which we do not need but the having had it exposed to us can never be of any harm. Provided precautions are taken such as not too bright a light or too loud a sound etc...

Any child will benefit from most you read here but a child with disabilities must have a chance to experience a lot more as they need to form those connections in the brain that they are lacking or have that range of motion that is essential to their development.

Click the links above to see what some of these may be. I've tried to provide what I know as it pertains to my situation with my daughter. I have also added some of what I have learned through my dealing with Therapists, Doctors and others with CP or having children with CP. By all means the information I provide is not complete and my advice is to get a doctors opinion and perhaps a second and a third if need be.

Below are some milestones that the CDC recognizes as ways to measures a Childs development. if your child does not meet the standards you should consult your physician. Also these standards are generalized for the average population. If you feel your child is in need even if they meet the criteria posted below then still have them seen by a professional.

 

It's time to change how we view a child's growth.
Do you know all the ways you should measure your child’s growth? We naturally think of height and weight, but from birth to 5 years, your child should reach milestones in how he plays, learns, speaks and acts. A delay in any of these areas could be a sign of a developmental problem, even autism. The good news is, the earlier it’s recognized the more you can do to help your child reach her full potential.

Developmental Milestones
3 Months
7 Months
1 Year
2 Years
3 Years
4 Years
5 Years
Interactive Tools for Parents
Learn More About Child Development
Fact Sheets
Developmental Screening
Autism Spectrum Disorders
Cerebral Palsy
Vision Loss
Intellectual Disability
Hearing Loss
ADHD

 

Courtesy of the CDC

Be Safe! Visit www.cdc.gov

CDC.gov ( www.cdc.gov ) is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC).

 

I would suggest you read the page on this site called " More Information of CP provided by NINDS As it delves deeper into CP and its causes and treatments than I do on this page. If you have questions post them in the forums.

 

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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