Cerebral Palsy Family Support TM

     As a small child they may work on grasping kitchen utensils or just using those at the dinner table. They will work on different methods to get dressed and button or tie ones shirt or shoes. They will work on trying to get the person as self-sufficient as they can. As the child grows older they may work on living skill in the home like doing dishes and laundry and eventually to transitional things like job training. It really depends on the form of the disability and how well the child is able to function.

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?

     A Therapist can make recommendations for apparatus that will aide in ones ability to do certain tasks. Whether it be a simple kitchen gadget that will hold a bowl in place to modifications to your automobile to allow easy access or the ability to drive. In many cases you would take these recommendations to your local Department of  Developmental Disabilities and try to get them to spring for the cost.

    We have fought for everything Amber has gotten from the DDD and that has not been much. Perhaps $200.00 worth of stuff over the past 15 years. She qualifies for up to $2000.00 a year but getting a dime is like pulling your own teeth. They always have a reason to deny you even when you have several Doctors and Therapists letters in hand stating that these items are essential. If they can't come up with a good reason they will use the "Your child won't be the only one to use the item" line of crap.

     It is worth trying, especially on expensive items but be prepared to buy it yourself. I've found DDD does little more than make my life miserable.

     Many items that will help your child can be made at home, if you have a bit of talent or imagination. The Doctor may be able to give you a prescription for some items that can then be made at the hospitals orthotic unit or bought at a medical supply store and if you have decent insurance most will be paid for. But expect to have to fight for most everything.

      The Occupational Therapist can give you ideas as to where to get certain items and they can even help in smoothing over the process but they are not Doctors and they cannot write a prescription for an apple peeler, if that is what is needed. Nor could a Doctor for the most part. These items are either to be fought for through your local DDD or bought by you.

     (Speaking of the apple peeler this is not something we ever asked for as we had one we used a lot cause we can a lot during harvest. Amber found it fun and rewarding to help using the peeler. If securely placed she could do as well as I and her contribution did not go unnoticed.) As a young child the mere fact of doing something useful that helped the family was of great significance, it also brought great reward and pleasure to Amber.

      The Therapist will work with you and your child on how to accomplish tasks that for most would be easy. They will show you certain tricks they have for getting essential things done or work with your child in brainstorming a way to make it happen.

      Amber had great difficulty washing her hair and the Therapist actually went into the shower with her (in bathing suits) and showed her how she could manage it herself instead of calling for Mom.

      Simple everyday tasks can be daunting obstacles for the impaired and an Occupational Therapists job is to try to make them possible. They don't always succeed and in failure we often find frustration but One must always keep trying. It took a year before Amber could tie her shoes and two years before she could put her hair in a pony tail. But given time and trial and error much can be accomplished. There will always be a lot that can't, depending on how severely your child is affected.

       Do not hesitate to use your Occupational Therapist to help you brainstorm ideas nor to write letters to DDD or DSHS or whatever other places you need help from. A letter to the school, your child attends, can do wonders in getting special consideration. Even if they are already in a special needs program under an IEP or just the 504 plan.

     Occupational therapy is simply a means to help your child cope with every day life. The Therapists will work on helping your child succeed in a task they find difficult and yes they are there to help in preparing your child for a job if that is necessary. I think it is obvious what the difference in Physical therapy and Occupational therapy is. Take advantage of both to the extent you can. Especially while your child is young and more apt to be able to adapt. Also while they are covered under your insurance as a child. Once they hit that 18 years old mark services will drop dramatically so take advantage of all you can while you can.

      Your Therapists can be exceptional advocates for your child. They may not have the time nor the inclination to go beating down doors but we have never found them unwilling to write letters and send emails on our behalf. Getting DSHS or DDD to take notice is a whole other mater which requires a lot of time and effort on your part. If you happen to have money you can usually get what you want through a lawsuit but if you have the money for a Lawyer you probably would be better off buying the damn thing yourself and save the aggravation of dealing with bureaucrats whose sole purpose is to make your life miserable while they draw a paycheck. 

     BUT if you feel it is worth fighting for then by God fight. You may not win but this is your child we are talking about and you are most likely the only person who cares enough to put in the time to fight the system. You may not win but at least you can say you tried. And another thing don't take the first NO as an answer. In fact don't take the first dozen NO's as an answer. You keep fighting. Sometimes you can wear them down. Use your Therapists and Doctors letters and threaten lawsuits if you feel it appropriate.

     DDD dropped Amber when she was about 11 years old. I immediately filed a complaint and started the process for Court action. I hadn't the funds for a Lawyer so I was defending myself. I spent nearly 4 months in preparation and had a folder 5 inches thick with letters and tests and documentation of every aspect of Ambers life. I got a call the evening before the Court date stating DDD was dropping the case. I've never again had DDD say they were dropping Amber from their roles. Though we haven't ask for, nor received anything from DDD in several years, I wasn't going to let them just arbitrarily drop her. I would have won. I had an ace in the hole in a piece of paper that showed Ambers WISC III test scores when she was in 3rd grade was a 69. This alone was cause to keep her on DDD, though I had plenty of other ammunition.

   What really pissed me off was their dropping the case the afternoon before the trial. They had either never intended to go to trial and were just bluffing me in hopes they would be able to drop Amber and I would sit back and do nothing or at the last moment they knew I had them beat. How they would have known is beyond me as I never told them anything. I will assume they were bluffing and so should you. Take them to court if you have to. It is the only way to know for sure if your child will qualify or not. DDD like all governmental bureaucracies are not interested in you the individual. They are interested in their own job security and their budgets and occasionally they will do something of worth to justify their existence. Do NOT allow them to bully you. If you feel your child has been denied unfairly their are generally protocols in place to protest and you can always go over their heads and if necessary sue them.

      The best place for information is from the Therapists themselves. Most Hospitals have them and if you make an appointment they are usually willing to answer all your questions.

Occupational Therapy, like Physical therapy, is all about Quality of Life / Standard of Living

Your Child deserves every opportunity to be independent and baring that the absolute best Quality of Life / Standard of Living You can provide. Occupational Therapy is just another of the Treatments that can help to meet those goals.

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. 

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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.

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