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Cerebral Palsy Family Support TM |
Cerebral Palsy
Family Support Network TM
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Cerebral Palsy Family Support TM |
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Pathways in the brain are adapting all the time, mostly as a
fetus, but a lot when we are newborns. The more stimulus we get the more
synaptic bridges we create. If you have a child with Cerebral Palsy having them do
all sorts of exercises early in life may allow the brain to reroute
impulses and get things moving that would not if left alone.
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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Physical Therapy for Children with Cerebral Palsy and other Disabilities
The single most important thing you can do as a parent as regards therapy is work with your child on their 'Range Of Motion' Now what do I mean by that you ask? Well quite simply it is stretching and moving the extremities as well as the torso, head and whatever else you can think of. Most children with Cerebral Palsy have trouble with range of motion. Sometimes this is so minimal that it does not present as something a normal person would notice, so the best thing to do is exercise that baby. I don't mean put them on a treadmill for an hour but just play with them. Make them do things that make use of their fingers, hands, arms, toes, feet and legs. Twist and bend the torso and neck. GENTLY, This is a baby after all. As they get older keep them as active as possible. Why you ask? Well pathways in the brain are adapting all the time, mostly as a fetus, but a lot when we are newborns. The more stimulus we get the more synaptic bridges we create. If you have a child with Cerebral Palsy having them do all sorts of exercises early in life may allow the brain to reroute impulses and get things moving that would not if left alone. Children without Cerebral Palsy could benefit as well. If your child has Cerebral Palsy these simple exercises and a bit of stretching will increase the 'range of motion' and thereby overcome some handicaps. Now this is not to say that your child will recover full or even partial mobility but it will help. My daughter has no fine motor control on her left side. As soon as we became aware of a problem we were told by the neurologist, therapists, pediatricians and others to keep that range of motion going. Had we known at birth we would have started then but we had no clue till Amber was a year old. Many pathways had already been set. Still we worked hard on range of motion skills and I believe that they did make a difference. Had we started sooner who knows what benefits would have been had. I have video tape of Amber reaching out with her left hand as a baby. If we would have encouraged this she may have more use of that hand today. By the time we became aware and started physical therapy it was to late to make much of a difference, but still I believe there was improvement. As Amber grew we started incorporating game play into range of motion. We would play ball with her but require every other throw be made with her left hand. We would have her walk quite a bit instead of pushing her in a stroller. We laid her down and did stretching exercises with her. A child wants only to please you and you can get them to do a lot. But not all at once, they are after all just a child. When Amber was a bit older we taught her of money and how she could buy ice-cream with it. When I came home from work I would spill the change from my pockets on the table. Amber was told that all the coins she could pick up with her left hand she could have. At first she could pick up none so I got a ball of plumbers putty and had Amber hold it in her left hand and press it onto the coin so it would stick and she could then take it and place it in her bank. The use of the hand is what was important. Eventually she was able to pick up the larger coins by hand. Not very well and frustration would set in but occasionally she was able. Get them involved in every activity you can. Amber was in ballet at 3. She wasn't any good but its all about that range of motion. Also at 3 we got her into gymnastics classes. Again she was not the best on the mat but it was fun and she loved it and it was exercise. Range of motion. Most community colleges offer some form of early childhood education and we enrolled Amber in these classes as their test case or lab rat if you will. She got extra therapy. Therapy we could not otherwise afford. We also had her at the University of Puget Sound at 3 or 4 years of age as the test subject for students learning to be therapists. This was free as well. Our insurance at the time would only pay up to $5,000.00 in therapy costs. Amber went through this in 4 months. We paid out of our pocket another $7,000.00 or as much as we could afford in any given year. We had her in Ballet and Gymnastics and in as much free therapy as we could. When she got even older we signed her up for sports through the County Recreation Centers. Soccer, basketball, baseball... whatever was available and we could afford. Once she was school age we had her in every sport and as she got older yet and could not make the cut for teams we paid for Tae-Kwon-Do classes and took her to the school tennis courts to play tennis. I tore my Achilles tendon playing tennis with her and was in a cast for 6 weeks. Due to my health I usually stand pretty much in place and if the ball isn't within reach I let it go. This time it was close and I figured I could get to it. Should have let it go. Having had a clot (DVT) in my right leg weakened the tendon or so the Doctor said. What I'm trying to get across is you start early, as a baby and you keep going. Range of motion is by far the one thing your child or any child needs and as a parent perhaps the single most important thing you have control of. As they grow you get them as involved as you can so as to keep that 'range of motion' and so long as you are capable you try to keep up. This is something a couple visits a week to therapy is not going to be enough. You have to keep at it and it won't be easy especially when they get to be teenagers. Find it in yourself to keep going cause without you they haven't a chance. Maybe a slim one at best. Range of Motion = Quality of Life /Standard of Living. You have to do what you can to make it happen. Physical therapist for the most part will allow you to watch the therapy sessions and you can learn the techniques used to further 'range of motion'. In some cased as with Amber there are relapses. Amber developed arthritis at about 7 or 8 years of age and this took a toll on range of motion. Eventually through medication the rheumatoid arthritis was in remission and gains were again made. Then as Amber entered high School she developed severe Dystonia in her left leg and hand/arm. the pain was debilitating. She suffered so much and again range of motion was impaired. She now wears Orthotics that stabilize her leg/foot and her arm/hand and in so doing she is losing range of motion. She has started using a walker and we are talking of a wheelchair. She wants a motorized one for independence but we will never be able to afford one on our own. Update Nov 1, 2008 . I was able to get a motorized electric mobility chair on Craigslist for $600.00. It came with the carrier for the car. I still have to get overload springs or Air Ride Suspension for the car to carry the extra weight and a ramp to get over the stairs entering the house. We are strapped right now and it will take a while till we can afford these items but Amber uses the chair almost exclusively at school so it is not a major problem at the moment. We hope that in time we will find the right combinations of medications so that she can be rid of these Orthotics and a wheelchair will not be needed. (Obviously this has not happened as yet) As it stands the Neurologist is reluctant to prescribe more than one med at a time and in doing so this will drag out years. Also the people at Pain management at Children's Hospital in Seattle will not prescribe pain relievers as they are narcotics and so Amber suffers. The therapies and the massages and even the E-Stem device on loan from children's therapy at Good Samaritan Hospital can only do so much. She cries herself to sleep at night cause of the pain. Occasionally when it is really bad and I know she needs it, I give her one of my pain meds to help her sleep. The Doctors won't and I will not watch my child suffer cause they have a fear of some addiction. She gets a pill maybe once a week or so when it is really bad. I don't think this is going to lead to addiction. If they do not get a handle on this by the time she is 21, I do believe she will turn to narcotics or alcohol for relief. And who could blame her. To suffer chronic pain at but 16 years of age? They should be doing more but the more you push the slower they go and right now they are crawling backwards at a snails pace. I can't believe they have so little compassion or are so worried of a malpractice suit that would let her suffer so. Update Oct 18, 2008 Amber is now on percoset and vallium prescribed by her doctors and that wheelchair will almost certainly be forthcoming. The wife does the massaging and exercising with her and Amber wears the E-Stem (electro-shock unit for her Dystonia) while at home and school. She takes her meds before school and immediately upon her return and occasionally if she has lost too much sleep and can no longer concentrate in school, I give her a vicodan or a percocet to help her get a nights rest. They can haul my ass off to jail but I will not stand by and watch as she suffers. I've offered her a glass of wine but she does not like the taste of alcohol. Maybe I'm wrong but I can't stand by and do nothing. Seeing your child in pain and listening to her cry herself to sleep because of pain is more than I can bear. Someone turned us into CPS and luckily for me Amber had been given her own prescriptions before they made it out to the house. CPS found no fault and so did nothing. They did however leave a list of places that low income can get necessities and clothing. The wife was able to get some items but it is first come first served and you never know what they might have. Sorry, off on a tangent again. I do that a lot so you will have to get used to it. Back on track. Physical therapy is your Childs best hope of being able to improve their Standard of Living. If it is but being able to pick a coin off a table to being able to run races the quality of life is decided by the 'range of motion'.
I would suggest you read the page 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.
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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
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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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