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

Cerebral Palsy Family Support TM

The forums are a place where we can post questions and receive answers and also a place for us to come together as a community of those with children having Cerebral Palsy or other disabilities and help each other. Few will be able to understand just where your coming from but those who have been there. Our experience may help you avoid the pitfalls and our knowledge may help you find solace. Let us be a community that cares for more than just ourselves and our problems and let us  reach out to help another.


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

 

Cerebral Palsy and Disability Posts

Please read TOS before using the forums.

Registration is required to post in any forum.

I check forums daily for spam and delete spam and ban user.

You will need this code to register:

No you can't copy and paste, as it is a .gif. Another spambot security measure and it makes the human element have to do a bit more. Sorry for the inconvenience but until they come out with more Mods ; This is the best I can do to keep spambots off the site and slow the human element. It is case sensitive. Write it down as you see it and enter it in the appropriate box on the registration page.

Enter the forum Here: Don't forget your registration code. These forums are new as of April 5, 2008 so please post so as to draw interest. An empty forum does no one good

Enter here:

CPFSN Forums (BBS)

A place to share our knowledge and ask questions. Hopefully a place to get answers. I am doing my level best to grow a community of people with similar circumstances or interests so as to aid in finding needed information and just to have someone to talk with of things we can't easily deal with. I have posted our story as well as a running blog of our plight. I do not expect any others to do the same but would hope that you will use the forums to get and give help as well as send in a story or two of some experience that could be of use to others in achieving their goals or needs.

As soon as I work out the kinks I will be posting a form so that you can easily send in any comments. Till I do use the forums or the email on the contact us page.

 

As to the spambot code; I will be changing the code every so often and putting it in different places. Once registered you will not need the code again unless you try to register under another IP, username and email. Which you will if you are a human spammer and I ban your IP, Email and Username as well as delete your profile from the database.

One cannot get rid of Spam totally. There are those who insist on getting their website URL in the memberslist so they get higher search rankings or the occasional click. I delete these from the database as well, but many who post the garbage do not care their efforts are in vain. Most are paid to post and so they do so without any thought of just how little time their post will be on the site.

 With but one Mod that basically is directed at Spambots there will be the occasional human Spammer. Eventually they will come out with Mods that will make their efforts useless as well.  Till then I will be online daily to remove these objectionable posts and delete them from the members list.

Despite what it says in the TOS I am not overly tough on posts. I do allow a lot of leeway as I too have been angered to the point of  wanting to kick some ass. Just be aware that should you slander any person or organization it is you that will pay the consequences. We take no responsibility for any post and though we try to keep the forums free of spam we do not try to censor your rants and raves.

Those of you who have had experience with dealing with the system and can offer advice we would appreciate your doing so. We would also encourage you to post your knowledge or write an article or an email to be posted on the site that can benefit others with similar problems.

Those of you who just want to be able to talk with others and share your problems and advice I would suggest you take the time to make a post. Many will not use the forums if there does not seem to be any activity. Your posting will encourage others to do the same and soon a community will be born. I will be monitoring and try to be of assistance whenever I can. Thank you.

 

TOS  

This has changed over time and some may be repeated or inclusive of other TOS agreements within the Forum.

Simple net-etiquette is all I ask . You will be warned if I get complaints and booted if they become a problem but hey, we are a community and we should be able to get along. If you want to curse the Rants Forum is not monitored, at least not for that.

By entering the forums you agree that you are at least 18 years of age and will not hold www.cpfsn.org or any persons or entities connected with www.cpfsn.org liable for anything whatsoever.

The opinions expressed in the forums are those of the poster not of any connected with this site. We only provide the forum we do not provide the content.

When you get to the Forums read the register information.

NO INSULTING OTHER USERS
 It's okay to have a difference of opinion, but there's no need to get personal over it. We will not accept members being rude, if you are rude to any member this may result in your account being deactivated/deleted.

POSTING IN THE FORUM

 I provide the Forums but have no knowledge of what is said in them unless I am monitoring. Even so the opinions expressed within any Chat, Forum or Post on this site is that of the person doing so and not me. Neither I nor any person or entity assume any liability whatsoever of what is said or posted or of any consequence thereof. If you don't agree to this then do not use the services. By using the services you agree that you are at least 18 years of age and agree that any consequence of using these services are born by you. If you do not agree then do not use the services.

Now I have no way of knowing age of the person. So I am entrusting you to be honest. I don't mind kids chatting. I just do not want it to come back on me if something happens. There are sites available specifically designed for kids that have monitored Chat Rooms. As Parents it is your responsibility to ensure the safety of your child. I would suggest you monitor your kids and send them to these protected Chat sites. If you let them Chat here I won't be held responsible. Simple as that.

I can ban users and will if I get complaints. I will not tolerate any Racial, Sexually Oriented or threatening content and will immediately ban a user for such stuff. Also if I can't read it, it goes. Sorry but all I know is English so if you post in a foreign language, I will delete it, as I do not know what it says. Also this short hand text crap that the kids use today, well I don't get that either, so it goes as well.

Read the full agreement below. And that on the registration page.

If you wish to lodge a complaint I need forum, date, time, user name,  and any other info you can provide so as to track the person and delete the post and/or ban them. I would like at least one other as witness to whatever the complaint is about If the post was removed. 

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Email 

Cerebral Palsy Family Support Network 

TOS  (continued)

This has changed over time and some may be repeated or inclusive of other TOS agreements within the Forum.

 

By accessing “Cerebral Palsy Family Support Network” (hereinafter “we”, “us”, “our”, “Cerebral Palsy Family Support Network”, “http://cpfsn.org/forum”), you agree to be legally bound by the following terms. If you do not agree to be legally bound by all of the following terms then please do not access and/or use “Cerebral Palsy Family Support Network”. We may change these at any time and we’ll do our utmost in informing you, though it would be prudent to review this regularly yourself as your continued usage of “Cerebral Palsy Family Support Network” after changes mean you agree to be legally bound by these terms as they are updated and/or amended.

Our forums are powered by phpBB (hereinafter “they”, “them”, “their”, “phpBB software”, “www.phpbb.com”, “phpBB Group”, “phpBB Teams”) which is a bulletin board solution released under the “General Public License” (hereinafter “GPL”) and can be downloaded from www.phpbb.com. The phpBB software only facilitates internet based discussions, the phpBB Group are not responsible for what we allow and/or disallow as permissible content and/or conduct. For further information about phpBB, please see: http://www.phpbb.com/.

You agree not to post any abusive, obscene, vulgar, slanderous, hateful, threatening, sexually-orientated or any other material that may violate any laws be it of your country, the country where “Cerebral Palsy Family Support Network” is hosted or International Law. Doing so may lead to you being immediately and permanently banned, with notification of your Internet Service Provider if deemed required by us. The IP address of all posts are recorded to aid in enforcing these conditions. You agree that “Cerebral Palsy Family Support Network” have the right to remove, edit, move or close any topic at any time should we see fit. As a user you agree to any information you have entered to being stored in a database. While this information will not be disclosed to any third party without your consent, neither “Cerebral Palsy Family Support Network” nor phpBB shall be held responsible for any hacking attempt that may lead to the data being compromised.

If you do not agree to the above then do not use the service.

Remember that you are not anonymous; you must be a member of the Forums in order to use them. Logs are maintained. The server keeps files and can identify your IP. We reserve the right to use this information for the purpose of control of the forums and/or forward this information to any law enforcement agency or ISP if we deem it necessary. IE: Threats against others we feel may have merit. Most often the user will merely be banned for an abuse.  Email is required. You can hide your profile from other users. This action was taken as most users of the open forum abused the privilege by posting ads where they were not allowed or posted obscene material. Even implementing this necessary step does not insure users will not abuse the forums. Rest assured that any that abuse the forums will be banned.

 

While the administrators and moderators of this forum will attempt to remove or edit any generally objectionable material as quickly as possible, it is impossible to review every message in a timely manner. Therefore you acknowledge that all posts made to these forums express the views and opinions of the author and not the Owners, administrators, moderators or webmaster (except for posts by these people) and hence will not be held liable. I strongly suggest you do not encourage spammers by just not clicking on any link in such post. We will eventually delete the post and ban the user as well as delete their profile from the database.

 

You agree not to post any abusive, obscene, vulgar, slanderous, hateful, threatening, sexually-oriented or any other material that may violate any applicable laws and/or the TOS. Doing so may lead to you being immediately and permanently banned (and your service provider being informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator and moderators of this forum have the right to remove, edit, move or close any topic at any time should they see fit. As a user you agree to any information you have entered above being stored in a database. While this information will not be disclosed to any third party without your consent, unless a violation need be reported to a law enforcement agency or by Court order, the webmaster, administrator and moderators cannot be held responsible for any hacking attempt that may lead to the data being compromised.

 

This forum system uses cookies to store information on your local computer. These cookies do not contain any of the information you have entered; they serve only to improve your access to the site. The e-mail address is used for confirming your registration details and password (and for sending new passwords should you forget your current one).

 

OK now that all the legalese is out of the way I just want to say that we really are a community. We can help each other more than outsiders can help us in most instances. Most really good information I got was from others who had children with disabilities. People who had been through what I was going through and shared their experience and their advise. I'm asking that you please do as much for those who post in the Forums. They are asking for your help. It is not an easy thing to do sometimes. Show them the respect they deserve and give them the answers they need if you have any.

Thank You 

The List of topics 

We basically had to start over with 0 posts cause I had to take the forums down because of spammers

CPFSN Forums: For Parents of Children with Disabilities.

No new posts Welcome & Site Info Introduce Yourself
Please take a moment or two to introduce yourself to the members of the site and Forum. Those Forums you see here are just those I thought of. If you have suggestions for other Forums please contact the Moderator. Or Administrator if you must. There is a bit about Terms of Use you did not get upon Registering. Main Point: No ads, No sexual or racist crap, No attacks on members. English only. If I can't read it it goes. I will ban users who violate anything here or within the terms of Use and I do act on complaints though I do so at my discretion. No forum is currently monitored regularly. So police yourselves.
   
No new posts General Cerebral Palsy Chat and Q&A
If you have a question that is not topic specific to a category listed below post it here. Cerebral Palsy takes many forms and to list all would be impractical. The conditions one must face arising from CP can be myriad and daunting, still there might be someone who can identify with your particular situation and may have an answer for you. We wish you success.
   
No new posts Cerebral Palsy - The Early Years – Pre-Birth to Preschool
Diagnosis, Symptoms, Treatments to include medical (medicinal) and all forms of therapy, Devises, Aides, mechanical and other, How to cope as a Parent, The needs of the Child, Finding help and support, Advocacy, and any Q&A dealing with a CP Child and their early development
   
No new posts Cerebral Palsy – K-12 – Till the age of 18
Q&A Dealing with Special Needs, The Schools, Doctors and Therapists, etc. Special Education needs, The IEP and 504 plan, Battling Fatigue, Reaching out for help, A Childs awareness and how to deal with this early and as they become teenagers. Friendships, Battles won and lost.
   
No new posts Cerebral Palsy- The Adult Years
Q&A Making Ones Way in the World, Job Training and Placement, Higher Education, Vocational Schools, Work Programs, Housing, Daily Life Activities, Continued discussion Medications and Therapies affecting Adults, New Ideas, Dealing with Disabilities as an Adult, Lifetime Awareness
   
No new posts Rants – CP or General Childhood Disability Related.
Got something you need to get off your shoulder. Problem with a Federal, State or Local agency or Just upset with having to deal with CP and the frustration has built to a point you want to explode? Here’s your chance. We take no responsibility for the validity of, nor in anyway assume any liability whatsoever for any content in the forums, Especially that posted here. Complaints may be acted on and posts removed, but we give a great deal of leeway here. Please keep your comments general so as not to invite a lawsuit. No last names. Avoid slander.
   
No new posts Raves - CP or General Childhood Disability Related
Have something good to say? A goal achieved, a problem overcome, an obstacle removed, an outstanding encounter, a great experience, a person of note. If something in anyway has made you feel as if you must boast of it and it has to do with CP or any Disability then by all means post it here. All of us like to hear that some have achieved success. It helps to know it is possible.
   
No new posts Treatments of Cerebral Palsy (Medical)
Medications, surgeries, botox (range of motion meds), seizure meds, pain meds, any conventional or unconventional medical treatment that does not have to do with Therapy. Medication is pretty much a necessity in most cases. Benefits should always outweigh risks. Always ask a licensed physician. New meds, reactions, degree of help, Q&A
   
No new posts Treatment of Cerebral Palsy (Therapy)
Q&A Physical Therapy (Range Of Motion) Speech Therapy, Language Therapy, Occupational Therapy and other Therapies to help in overcoming some symptoms of CP. Conventional and Unconventional Therapies. Note: Therapy should be started as soon as possible and kept up as long as needed. Sports and other exercises can supplement Therapy, but should not replace it. Tell us your experiences or suggestions
   
No new posts Cerebral Palsy – Medical Malpractice
How to know if something went wrong, what to do? Your experience and advice. Questions of where to go for help in determining if you have a case. How to deal with the process and lawyers, What to expect, What you’ve learned, Advice for others. Q&A., Free legal counsel for the low income, Tips for the unaware. Please no lawyers trolling for clients; advise yes, trolling no.
   

Other Disabilities having to do with Children

No new posts ADD, ADHD, OCD, ODD
Q&A If your child has a disability that has not been diagnosed as CP, or is very specific, then here is your place to post for Q & A as well as receive and give support and comfort. I believe some of these Disabilities can be attributed to CP. If any want I can separate into individual forums or add forums. I was going to separate these but didn’t know what sort of activity I’d be getting.
   
No new posts Aspergers, Down Syndrome, Autism, Mental Retardation
Q&A If your child has a disability that has not been diagnosed as CP, or is very specific, then here is your place to post for Q & A as well as receive and give support and comfort. I believe some of these Disabilities can be attributed to CP. If any want I can separate into individual forums or add forums. I was going to separate these but didn’t know what sort of activity I’d be getting.
   
No new posts Anything NOT covered above.
I have tried to make as many categories as I felt needed to be made. I have tried to give sample Q & A stuff you might want to have answered or sample posts you might want to make. I can separate out some if you feel there is crowding or I can join some if they are too similar. Just email me with your suggestions. Anything I haven’t covered can be posted here or I can make new forums. Than you for using CPFSN Forums.
   

 

If you have an idea of a topic you would like to have listed let me know.

 

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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.

 

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Spanaway, WA. 98387 

 

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