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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.
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What Causes Cerebral Palsy?
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What are the Risk Factors?
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Can Cerebral Palsy Be Prevented?
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What Are the Different Forms?
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What Other Conditions Are Associated With Cerebral Palsy?
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How Does a Doctor Diagnose Cerebral Palsy?
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How is Cerebral Palsy Managed?
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What Specific Treatments Are Available?
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Drug Treatments
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Surgery
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Orthotic Devices
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Assistive Technology
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Alternative Therapies
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Are There Treatments for Other Conditions Associated with Cerebral Palsy?
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Do Adults with Cerebral Palsy Face Special Health Challenges?
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What Research Is Being Done?
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Where can I get more information?
447 Specific Neurological
Disorders Many of these 447 Neurological disorders do not fall under the
heading of CP but are disabilities nonetheless. Links to resources for all
447 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
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
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.
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
CP FAMILY LINKS
Websites created by people who
have CP or someone in their family has CP. Sites whose pages are not directly
disability related. Net-etiquette applies. All sites are subject to
approval. Banners and text allowed on these links.
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..
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.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. http://tamicraft.com http://vintageslips4u.com |
Page:
1, 2, 3, 4, 5, 6, 7, 8, 9
| Jan 26,
2010 |
Amber is still about
the same and Joey is trying to keep it under control. He has his
moments as does Amber but for the most part they are getting along
in school as well as at home, and though the wife is having a bit
of trouble with her feet and getting the insurance to help pay for
meds and Orthotics for her we have been somewhat lucky in getting
the kids the care they deserve.
Amber is still taking an assortment of meds
and a valium or vicoden from time to time I think having a boyfriend
who has stuck by her is alleviating much of the stress, so she is
in better spirits. Though she still suffers the pain of the spasms
and now on both the right and left sides of her body.
If she can hang in there and finish High
school and her boyfriend doesn't dump her I think we just might
see some improvement come graduation. Less stress means less pain
and more smiles.
Joey on the other hand has a long way to go
to regain our trust and confidence. He is doing well but he needs
to do better both at school as well as at home. We have given him
more freedom to make choices for himself. It is up to him to make
the right choices. |
| Mar 14,
2010 |
The last couple months
have been a roller coaster.
Joey has had some more problems and a few
fights at school as well as arguments with us. He will attribute
it all to his ADHD but he does not take his meds regularly so that
may have a lot to do with it. We have grounded him several times
and he does good till we let him have his freedom then it is right
back to the bad behavior.
He seldom talks with us any more either
spending time on video games or watching TV in his room. When
asked to help he does so begrudgingly. I do believe the ADHD has a
lot to do with his argumentative state but I also think it is just
his age and the rebellious nature of a pubescent kid. Hopefully he
will grow out of it.??
Amber too seldom will talk with us in normal
conversation. Everything we say leads to an escalation and
eventually she will just walk away.
Amber has seen several more DR's and has been
seen for the 1st time at University of Washington's Movement
Disorder Clinic. It was a long drive and we were late as traffic
was bad so we got a half hour with the DR. then had to kill 4
hours and go back for another half hour. Amber texted her boyfriend
( who goes to UW ) and when he got out of class about 1 pm he met
us at University Village where we had gone to get lunch . We hung
out there till Amber's next appointment and her Beau was able to
see Amber's movement disorder in all it's glory as the DR' put her
through her paces.
He also saw how stress affected her ability
to function and how it affected her ability mentally as well. She
had great difficulty doing simple math problems in her head and I
think this was due to having everyone watching as the Dr.
questioned her. At home she generally is the one I ask for an
answer to a math problem if I get stuck. As an example I always
have a hard time with problems like 6 x 9 for some reason this
simple problem will elude me so I ask Amber what's 6 x 9 and she
will almost immediately pop out the answer 54 while I am thinking
63 or something. Anyway what I am getting at is that stress can
affect her ability to use her cognitive functions.
I think this display may have had some impact
on Amber and her Beau but time will tell as to what extent. But
Amber wanted him there saying it is better he know now than later.
I agree.
Afterwards we went window shopping at the
village and the wife spent a few bucks on some small items but for
the most part we just walked around and took Jay to have a burger
as he had nothing to eat all day. After a bit of alone time
between Amber and Jay we drove home.
We also had our last annual accounting with
the Courts for Amber's money and the Lawyer we hired for this did
an amazing job of getting all his ducks in a row , cause the Judge
said he had no problem with any of it and signed off on Amber
getting her money. We now only have to pick up certified copies of
his signing the court order and get any and all of the places
Amber has any money placed in her name. We show proof to the court
this is done and that will be last time we have to go to court.
YEA!!!
Amber already has plans for most of the money
and I think they are good ones. She left the court room crying
cause the stress was over but in Court she did exceptionally well
answering the Judge's questions, speaking loud and clear and
stating her intentions without being withdrawn or demure. It was a
good moment for her and she shined. I was quite proud of her self
advocacy. |
| June 6,
2010 |
It is becoming more difficult to find the time to
keep this blog updated. So far everything is about the same as far
as Amber's condition except she is now overly anxious about
graduation and getting her classes in College set up for the Fall
quarter. She and Jay are still together and she hopes to spend more
time with him over the summer.
Joey got to be too much to handle so Tami and I
decided to let him live with his Grandmother for a bit to see if he
can calm down and control his emotions. He still does as he wants
but seems to listen to his grandmother more than he did to us. I
think she is more lenient as far as letting him do what he wants but
at least he is not here disrupting our lives.
While Amber is doing as well as can be expected
and is getting mostly A's and B's in school Joey is failing most all
his classes. He just does not care and I believe he is doing drugs.
We have had him in counseling , which he thinks is a joke, and
he has had some trouble with the Law but this has not made an
impression. I fear unless Joey turns it around his life will be
inconsequential. Amber however is doing her best to keep striving to
attain her goals. She has her bad days but with Jay around more good
than bad lately.
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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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