Cerebral Palsy Family Support TM

The CP Links Page is where you will find most Federal, State and local County pages.

WHAT IS CP
CEREBRAL PALSY
My attempt to clarify CP you may find the information provided by 'NINDS' (below) 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.

• 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?

      Since Amber did not have problems with language I know nothing of this so will concentrate on Speech Therapy. The formation of sounds to produce understandable words.

      There are people who seek speech therapy because of learned deficits. For instance if you were raised in a foreign country and learned that language you may have great difficulty in formation of words in English. Given time these limitations can be overcome because this is a learned speech problem. Though you may speak with an accent the rest of your life it is only because you are lazy and choose not to devote the time necessary to train yourself to speak without an accent. However if you had a stroke at birth you may not have the motor control to move mouth and tongue in a way that enables you to effect certain speech or sounds.  For a person with CP motor control is most often the contributing factor. There are however those who have perfect motor control but have a learning deficit that affects their speech, or a combination of both.

     Again Amber had a stroke at birth and my knowledge is mostly of motor control problems, though she does have learning deficits I do not believe that this interferes with her ability to reproduce sounds. Most of her difficulty can be attributed to motor control.

      If you even remotely think your child might have a speech problem you should see a Speech Therapist as soon as possible. The reason is we learn much easier at a young age and speech is a learned task. It would be much easier to learn correct speech when young that try to correct bad habits later in life. That said a Therapist might not be able to help in some cases or be of limited help. If your child has CP and the CP is the contributing factor through loss of motor control then unless the Therapist is able to find another way to produce a sound than that which is most common, it might be that your child will never be able to form certain sounds. Though with practice communication on some level may be possible.

      In Amber’s case she has left hemiplegia. This affects the motor control of the left side of her body including the mouth and tongue. We started her going to speech therapy at about 1 year old as that is when we noticed the difficulty she was having. Most children struggle with speech when they first learn to talk and most grow out of it and learn proper speech in time. Knowing Amber had CP we thought it best to take her to a Therapist right away. Good thing we did as she spent several years learning how to correctly produce sounds. Some sounds still elude her but she has gotten all she can from therapy. She can speak well enough that most do not notice and those that do seldom comment on the slight difficulty she has with some sounds.

     She is currently taking Spanish in school. A requirement for college entrance is 2 years of a foreign language. It is physically impossible for her to place tongue to roof of mouth and trill her R’s. Believe me she’s tried. She just does not have the motor control to make it happen. Had the therapist worked on this when she was a year old perhaps she could but now at 16 she has already formed all the motor control connections she will and this movement eludes her. It is quite possible she would never have been able to do this anyway, therapy or not.

     It is not uncommon for a child to have speech problems especially a child with CP. Therapists can do wonders given time but they too fail at some point. Physical limitations just are not that easy to overcome. If the disability is severe enough the best we can hope for is that we can teach the child to make sounds we recognize for different things. Like a gurgle for thirsty or a moan for having to go to the bathroom. Everything that can be done depends on the severity of the disability and the knowledge of the Therapist.

     When Amber was very young we got a cat. We tried to get her to call it by saying “here kitty kitty” Amber would always say “he ki  ki” I believe most very young children would do the same. The difference was we knew Amber had CP and so we worked with her on forming the correct words. This took considerable time so we let her name the cat ‘kiki’. Yes I know in some languages this refers to crap. But it was the only way she could call the cat at the time. She can now form the words without problem except for a slight problem with the R in HERE. The cat is still called ‘ki ki’. I suppose what I’m trying to get across is to not let speech (sounds) or language (word) difficulties slide. If you see there’s a problem work on fixing it. Don't just let it slide. Just as in the cats case we did allow Amber to call the cat kiki but we did not let it go there. We continued to work with her till she could reproduce the correct sounds. letting your child slide is not doing them any favors. If you know your child has CP or other disability,  seek out a qualified Therapist.

     There really is not anymore I can say on this subject. I would encourage you to seek out more information. And seek the advise of your Doctor and Therapists.

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. 

Make a secure donation/gift through Paypal by clicking on the link below:

Or you can make a donation manually by following one of the steps 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.

 

If you do not see an email address it is because you need to enable javascripts. The email is in javascript to foil the spambots.

You can also mail a Donation/Gift to 

Tami Taormina

P.O. Box 4463 

Spanaway, WA. 98387 

 

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)

 

All rights reserved by  2007 -2010

This site is optimized for a resolution of 1024 X 768