Having a child with Cerebral Palsy and other disabilities and how we as parents cope and advocate for our daughter. You may find answers to your questions through our story. If not there are other informational pages on this site and links to other sites.

SITEMAP 

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

    When I started this site my interest was in making it easier for others to navigate the system and get the services they needed. But it wasn't long till I realized most of what I knew came to me from others or through 16 years of having to deal with DSHS, DDD, Doctors, the Schools, and various people and organizations that dealt with Cerebral Palsy. So how best could I get this information to you? I just started building and adding as I went then it came to me that each of us has a story to tell. So I built the Share Your Stories Page in hopes that people would post so that others could learn. Then I realized I had a story of my own so I built this page.

     My name is Robert Taormina and I am responsible for this site. The wife, Tami, has put her 2 cents worth in, here and there, but I am the one to blame.

• Born in Washington State but raised everywhere USA as my father was in the military.

• Graduated High School and went to work as a 'pond monkey' at a lumber mill. The city eventually forced us out to another mill with no waterfront and I started splitting core blocks with a splitting maul and wedges 10 hours a day. Put on a lot of upper body muscle but there had to be easier work.

• Realized the work was too hard and went to college (2 years)

• Majored in Law Enforcement so became a cop for all of 4 months. Not the life for me.

• Went truck driving and met my wife to be, on the road in California after I'd already been trucking for 6 years

• Got married at the ripe old age of 29

• Taught the wife how to drive and we long hauled it for another 3 years till she became pregnant with Amber.

• Got off the road and used the proceeds from the sale of the truck and trailer to start an excavation business.

• Major health issues 3 years later and I lost the business  and we have been struggling ever since

        Tami:

• Born in California and pretty much stayed there.

• Graduated High school and went to work teaching in a pre-school. Got in trouble for actually teaching as back then we were just supposed to baby-sit.

• Went on to Vo-tech school to be a computer operator of mainframes back in the mid 80's. Learning DOS and Data entry.

• Pretty much did menial jobs and translated sign for the deaf and other community service until met hubby Robert in mid 80's while going to Vo-tech

• Barely learned how to drive an 18 wheeler (Sorry for those I scared more than myself) Spent 3 years longhaul

• Got Married at 26 years old

• Got pregnant with Amber and got off the road. (Your welcome)

• Been a housewife ever since but have kept busy with a lot of volunteer activities.

• Had a second child, a boy 3 years after Amber. He's healthy and a lot to handle.

      And that's pretty much all there is about us personally up till Amber was born.

   Some of what I will now talk about may be repeated in Amber's Story Page. But I hope to not be too repetitive.

    Amber's birth was a hard one for everyone. Tami went the full monty on the birth right up to forceps and then an emergency c-section. Amber did not breathe on her own for the first 7 minutes. The Doctors thought that she might die. I'll talk more of this in Amber's Story.

      We were dutiful parents. The wife did not smoke or drink during her pregnancy and she took the prenatal vitamins and we both attended Lamaze classes. The OBGYN Doc said everything was fine and an ultrasound proved it.

      There was definitely a problem with the birth and Amber spent her first 2 weeks in ICU. When she came home we noticed she had trouble but really had no idea how bad it was till she was nearly a year old and a neurologist labeled her with left hemiplegia. Sure we knew she was on meds for seizures and she had some problems but how severe we hadn't a clue. We got her in therapy and started to learn of just what it was she had and how we could help her get better. We soon found that there was no cure but through rigorous physical and occupational training she might regain some mobility. We actively sought services for her.

     It was about 3 or 4 years later that I got a kidney stone that my Doctor could not diagnose and after 6 months of unbelievable pain I got a new Doctor who knew instantly I had a kidney stone. Everything went downhill after that. I had lithotripsy on the stone but the Doctor missed and blasted my kidney instead. Now he will tell you I pissed blood clots, but I'm here to tell you it was meat and chunks of it. The stone wouldn't pass it got stuck in the tube leading down from the kidney to the bladder and there it stayed and after a month he tried laser surgery which went bad and he placed a stint in which pushed the stone back into the kidney. I started having leg pain but figured I had an appointment in 2 weeks so I would talk to the Doc then. I went in to get the stint removed and mentioned the pain in my leg. He sent me for an ultrasound and found I had deep vein thrombosis or to you, a blood clot of the major vein in my right leg. As the leg pretty much died off from lack of blood flow, the pain was almost as bad as the kidney stone. Oh and I had a vena-cava which is a titanium screen placed in my chest to stop a clot from going to my heart, lungs or brain and killing me. I didn't lose the leg. Still enough circulation to keep it alive but seldom a day goes by it doesn't hurt and swell especially if I'm up and about but even sitting unless it's elevated. But you get used to it, to a point. I'm still having kidney stones but much smaller. Passed 4 last year. A record for me. :) Usually just 1 or 2 a year.

     No, It wasn't a good time to be me back then, but I have to hand it to the wife, she kept it together. She took awesome care of me as well as Amber. I was pretty much bed ridden and Amber had tons of Doctors appointments and therapies and other activities, but the wife got through it somehow.

     We lost the business but lucky for us we had invested in rental properties and we could survive. I sold some to pay off others and when all was said and done we had 4 rentals units left which after taxes and expenses we  were able to survive, barely, but we managed. I couldn't and still can't get any State assistance cause I have 'assets'. They say sell the assets and we will help, but to do so would mean I would have to sell 'all'.  I must have no assets to receive any help. Then we would be on welfare the rest of our lives. Why sell the kids inheritance just so we can eat steak instead of hamburger? Eventually the kids will grow up and move out and then the little we make will be enough. I can't do it. Can't sell my kids future. So we go to the food bank twice a month and we pinch pennies and we survive. The wife sells a few items on Ebay and some off the web and some locally. Her mother has bought a lot of embroidery equipment and they make a few bucks, but in 2006 they posted a $3000.00 loss on her business with just $600.00+/- in sales. More a hobby than a business, but she is trying.

     In 2006 we made $21,300.00 adjusted gross on our tax return.

    For a family of 4 in Western Washington State that is poverty level no matter the national average is currently 2008 around $21,000.00. Here the cost of living is high. Washington State ranks second only to Connecticut as the highest taxed State in the Union at 36.7% when one considers all taxes imposed. And just our local sales tax is 8.9% and don't even get me started on property and gas taxes, what with all the add-ons and special levies and such. The low priced homes around here go for $250K and up. And everyone's digging into your pockets for more all the time. I can't raise rents fast enough to cover taxes and inflation so every year we have less and it costs more. 5 years ago I made $27,800.00, 2 years ago $25,600.00, last year $21,300.00 and most likely even less in 2007. Yet you go to the store and milk is over $3.00 a gallon, double 5 years ago and gas is over $4.00 a gallon (spring 2008 price). And they say there's no inflation!!!! Those SOB's in Washington need to go to the grocery store once in a while instead of having 20 course dinners at some fancy restaurant on the taxpayers dime. How are we to feed our family and drive Amber to all her Doctors and Therapists appointments?

Sorry, I digress.

    Anyway that's pretty much all there is to say about us. I will talk more of what we have had to endure as far as dealing with DDD, DSHS and others on the next page. Perhaps you can learn from our mistakes or from what we did right. The Doctors don't tell you much, the therapists tell you more and others in the same situation are probably our best source of information when it comes to a child with disabilities. Cerebral Palsy, left hemiplegia, Dystonia is our daughter's major ailments. There are others that stem from this but I will discuss them more later.

    For now that's all there is to say about us. On the next page I will get more into our dealing with CP and what we've done to try to help Amber.

Fighting the System
 Page 2 

P.S. On January 17 2008 I was horsing around with my son and this was the result. He is 5'4" 120 lbs and I am 6'1" 240 lbs. I think those Tae-Kwon-Do lessons have paid off.

Yea it's a broken leg.

The Doc says maybe in a year, with therapy, I'll be back to 90%. The kid felt bad about it but it was my fault. Everyone said to stop before someone got hurt. I was too dumb to listen. 

Update Oct 2008. The leg is not healing correctly and they are planning on another operation. Likely they will cut out a section which will shorten the leg a bit but allow for a better joining of the broken parts. The Doc is talking of putting a rod down the middle of the bone. Operation is scheduled for Dec 1st 08

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