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They all have something in common and that is to increase the
Standard of Living / Quality of Life for all those who are disabled. Yes even medications increase your
Standard of Living / Quality of Life. Though medications may be
prescribed for any number of conditions the ultimate goal is to better the life of the individual. If you have
Cerebral Palsy or a Child with Cerebral Palsy you know there is no cure. A medication is not like an antibiotic to
Cerebral Palsy. It will not cure it as an antibiotic may cure a sickness. The medication is to alleviate some discomfiture or to stop seizures or promote a healthier
Standard of Living / Quality of Life. In other words it treats the
symptoms not the underlying cause.
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. My attempt to clarify CP you may find the information provided by NINDS is more specific and detailed There are many different treatments and I only name those I am familiar withHow it is essential to maintain range of motion How it is essential to maintain quality of life What I know through my experience By far not even close to what you should know and Orthotics Again what I know through experience Much more can be had searching the net or talking with doctors and therapists CP LINKS Cerebral Palsy Glossary More Information of CP provided by NINDS Specific Neurological
Disorders My take on the IEP,
IDEA 2004 (Public Law 94-142 & Public Law 101-476), and the 504 plan. IEP overview 504 plan & IDEA Q&A
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& Washington State Chapter 392-172 WAC
SPED special education and the IEP FORUMS (BBS)
MEMBER PAGES
Pierce County Events
AMBER'S 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. 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 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 with me in trying to educate the public of CP and other disabilities What motivated me to build this site 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) Other sites I have or to be more precise the wife has and I take care of.
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Medications and Orthotics
Might have bitten off more than I can chew on this one. I can talk of what I know as far as medications my Daughter has taken and Orthotics she wears and what has worked and what hasn't but be aware what works for one may not work for another. I’m not a doctor and advise you to consult one if you even 'think' there is a need. First I'd like to say DON'T ASSUME that your Child's Doctor is infallible. They are just people and people make mistakes. With computers we now have access to a lot of information on drugs and their side effects and interactions with other drugs but even so they make mistakes. You should take the time to look up any drug that is prescribed and note the side effects and interactions and if you notice any in your child or have doubts about the interactions contact your Doctor immediately. I'd like to give you an example before I move on. Me. I had deep vein thrombosis in my right leg. Big words that mean a blood clot. I was prescribed Coumidan, a blood thinner. I was also prescribed 2 other medications by a different Doctor who we told of all the medications I was taking. My physician was also told of these new meds and had no problem with them. A week after I started taking these meds I developed a bloody nose. Not just a run of the mill bloody nose but I was shooting blood 6 feet every time my heart pumped. Rushed to the emergency room my nose was packed like sardines in a can to try to stop the blood flow. I spent 3 days in the Hospital having to sleep sitting up so I wouldn't choke on my own blood. Eventually after having coughed up a couple pints of blood they cauterized my nose. After reviewing the records another Doctor said that I was in effect on 3 blood thinners. Although the 2 meds were prescribed for another reason they had blood thinning properties. No one caught it. 2 doctors and the pharmacist and not one caught it. I'm pretty anal about researching meds now. You should be too.
I lump these categories and more together even though they may be dissimilar. I do this because they all have something in common and that is to increase the
Standard of Living / Quality of Life for all those who are disabled. Yes even medications increase your
Standard of Living / Quality of Life. Though medications may be
prescribed for any number of conditions the ultimate goal is to better the life of the individual. If you have
Cerebral Palsy or a Child with Cerebral Palsy you know there is no cure. A medication is not like an antibiotic to
Cerebral Palsy. It will not cure it as an antibiotic may cure a sickness. The medication is to alleviate some discomfiture or to stop seizures or promote a healthier
Standard of Living / Quality of Life. In other words it treats the
symptoms not the underlying cause. Update: Amber has been trough 5 medications as well as botox shots and is now seeing an acupuncturist but nothing so far has had any lasting effect and much has had side effects that were worse that the condition they were prescribed for.
Do the benefits out weigh the risks? Well yes, in
most cases. Sure taking drugs over time especially a lifetime cannot be a good thing. It will affect her liver at best and other parts of her body to include the pancreas, kidneys and
her mind at worst. But if she didn’t take them she would be flopping around on the floor a couple times a day and the Dystonia would be crippling pain. Again it is all about getting the symptoms of CP under control not about a cure. And this is done to improve her
Standard of Living / Quality of Life. Only your doctor can tell what medication would best suit a particular condition but you may find that a medication that is most often successful with the majority of patients will not work for you or your child. Trial and error are a part of the process and yes it might take time to find the right med or combinations of meds and it is quite possible you will have to resort to surgery to control spasms or other side effects of the underlying cause. Devises, Aides, Orthotics Again all about Standard of Living / Quality of Life. The extent of your disability will determine what are your needs but why should people who suffer CP not enjoy the best quality of life they can receive? Orthotics may over time actually cure an ailment. Say if one has a curling in of the foot and you wear an orthotic for several months or years it is quite possible that in time you will no longer need the orthotic. Then again you may need it for the rest of your life. Amber now uses an 'E-Stim' & TENS unit combo. I hope I got the spelling right. Anyway what it is: It is a rechargeable, battery powered electrotherapy unit she wears on her belt or stuffed into a large pocket. It has 4 wire leads she places in specific areas on her leg and it gives her intermittent shocks. These confuse signals to the brain and it relieves the pain she has for the severe Dystonia she now has. This is on loan from Children's Therapy as our insurance has declined us so far and we cannot afford one.
There are organizations out there who will help advocate for your child. There are others who will actually get the item you need if they feel it is necessary, and yet others who will help to raise funds through some sort of fundraiser so you can provide for your child. Many are local chapters of the Shriners, Elks, Moose, Eagles and other such organizations. They will help, all you need do is ask. Your local church can assist you through fundraisers. Just about every city or county has local organizations that will endeavor to help you get whatever it is you child needs. Sometimes you have to be a bit persuasive in that you won’t take no for an answer. It also helps to know someone who is a member of one of these organizations. Network with your friends maybe they are members or know someone who is. There are national organizations that will help and I’m sure you know most of the larger ones already. Don't expect much on the national level. Many of these are either overwhelmed in requests or they are run like corporations and though they say non-profit the CEO's make millions. Goodwill for example does not generally lease space to provide more for individuals, they own those huge buildings that are popping up everywhere. Millions spent on Real Estate that could go to those in need and the big shots who run the corporation make millions every year. And when you go to a Goodwill store how many disabled do you see employed there? We have 5 Goodwill's within 20 miles of us and we have been to each several times a year and I have only met 2 handicapped workers. One was retagging clothes and another had just been promoted from the floor to the register. ALL the other employees had no disabilities. Same with the Salvation Army. Besides the people that work at our local store are rude. I don't give to the Goodwill or the Salvation Army. There are plenty of other "local" organizations that I choose to give my money or unneeded items to.
Sorry off on a tangent again.
You need to hit these organizations up and see to it your child has what they need.
I’ve said it a hundred times. “You are your child’s best advocate”
You need to do whatever you can to provide for your child. If that means you go hat in hand begging for help then that is what you do. Your child’s quality of life will not get any better as you hold onto your pride.
Believe me, I know, cause at one time I would never even think of going
to a food bank or asking for help. I was a prideful person. But there
comes a time when you realize your family is suffering for your pride.
*******************************
The only sin which is clearly on both lists is Pride.
****************************
So long as you live your life by the 'Golden Rule' and harm no one in doing so. I think you can take pride in who you are. I think they are saying that when Pride gets in the way of doing what is right, it is a bad thing. So these words hold special meaning for me as I do what I can to provide for my family.
Good luck and remember never give up. 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.
Now I'd like to get a bit off track again. I recently got a flyer that was in with the free school lunch sign up sheet . I had never been able to get food stamps cause we had assets and so did not qualify . But this flyer stated. "THE RULES HAVE CHANGED. Basic food will be available to more people in Washington. The gross income limits will increase to 200% of the Federal Poverty Guidelines. Net income limits and asset limits are also waived under the expansion." It also stated. " There is no asset test for basic food. You can own a home, have a reliable car and have money in checking, savings, or a retirement plan and still be eligible for basic food" I can't tell you how excited I was. The monthly income guideline for a family of 4 was $3534 a month. That's $42,408 a year. Wow we could get food stamps cause we only make about $32,000 a year gross, after rental related expenses but not depreciation which is just a paper loss, and they even said we could deduct our own property taxes and insurance about $4000.00 a year and we did not have to count interest and dividends on the kids college accounts so another $600+ dollars off so we would be able to state we had only $27,400 in income that's just $2283 per month . Fully $1251 dollars below the guidelines. We were going to be able to get food stamps . YEA! So I called and the woman took my information over the phone and said yes we qualify but NO we would not get any food stamps. I was beside myself. How could we be so low in income according to the guidelines and still not receive any help. I was told that though we qualify under the guidelines that funds are not available for people who are making more than Federal Poverty level. I asked why in God's name did they publish a flyer that clearly stated the guidelines and income at 200% of federal poverty level, if they were not going to live up to the claim? I was told she didn't know but that was the way it was. Our governmental bureaucracy at work again. We more than qualify but yet we don't qualify. Can you believe it. I am so pissed I think I am going to write my state legislators of this crap. Here we do not qualify for any State aide except Basic Health and free school lunch, cause we have assets. The legislature has decided, as far as food goes, to no longer count assets against you and have increased the income guidelines to 200% of Federal poverty level and yet we still do not qualify. It is as though because an election is looming they want to be seen as some sort of saviors to the low income when in reality all they did was raise hopes and dash them upon the stony shore. We should vote all the incumbents out and start over with new blood. How dare they play with a persons emotions and basic needs in such a callous and cold way. They should all be fired. I for one will not be voting for any incumbent except McCune as his aide was of some help to me earlier on another issue. |
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And just in case any of you doubt the veracity of my claim here is the flyer.
Make a secure donation/gift through Paypal by clicking on the
link 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.
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You can also mail a Donation/Gift to
Tami Taormina
P.O. Box 4463
Spanaway, WA. 98387
I didn’t mean to make this page about my family and me. It seems
that's the way it turned out.
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.
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