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

Cerebral Palsy Family Support TM


Dedicated to helping families with children who have Cerebral Palsy or any other Neurological and/or Learning Disability find the support, resources and services they need.

Family Blog page 9

Our family has many difficulties that mostly relate to Amber and her Cerebral Palsy and other medical problems. Dystonia, doctors, medications and the associated conditions. But there are other family problems that compound our stress. Here I will attempt to write a blog that will keep concerned or interested parties up to date on our ability to find essential services for Amber and the family as a whole. I will try to keep this page updated but as time is at a premium and there are some personal issues that I would rather not post for all to see, it may not be as complete as I would like. I hope you understand that this is not done to garner sympathy but to both have a way for me to unload some of the things that are on my mind as well as possibly help others find answers in what we have done and avoid what has not worked. I would post to the forums for feedback but few use them. In fact I have recently taken them down for lack of interest.

Also there are quite a few family members that have their concerns and this will also serve to inform them of some of what is happening. Though I will not disclose anything I feel of too personal a nature.


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?

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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You can also mail a Donation/Gift to 

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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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