What is Cerebral Palsy
Cerebral palsy or CP is the most common childhood physical disability. It is a permanent physical condition that affects movement. A new international consensus definition has been...
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OT Asst Student seeking CP Knowledge
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Hey everyone, I would love to know more about CP, but from a parent's point of view. I have a few questions that I hope anyone would be willing to answer for me.
1. How has CP impacted the entire family? 2. What resources are you using and how did you find out about them? 3. What challenges do you deal with in raising a child with CP? 4. Has your child received OT for CP? If so, could you elaborate on that experience including what activities and possible goals. I have briefly researched CP and there is so much information on this diagnosis and it can be overwhelming. So I can only imagine how a parent might feel hearing this as their child's diagnosis for the first time. I know there are several types of CP and I welcome all in responding. Thank you for taking the time to help me learn and taking a glimpse into your family structure! Posted on 10/19/09, 08:10 pm |
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Hi,
I guess the first thing to let you know is CP is such a broad term that it affects each person differently. You have kids/adults with mild symptoms and then on the other end you have someone so severe they are wheelchair bound. I will try to answer your questions... 1. When our son was first diagnosed at 3 yrs 4 months, it rocked our world. We were every emotion out there and then some. This wasn't something that we signed up for and in the time since then we have educated ourselves on our child's disability. We tend to take things one day at a time since most challenges that hit us, blindside us. We have complete support of our entire family, mine and my husbands. 2. We use a variety of people as our resources not necessarily groups. Our son's doctors and therapists are great at helping out when needed. My son has been part of Developmental Disabilities for the last 4 years, but we had no idea what kinds of resources they could provide. They are going to pay for anything that his insurance won't cover for his wheelchair. 3. Raising a child with CP is a challenge in itself. Whenever you go somewhere there are always going to be people that stare and it's something that I personally, have got used to. Lately our biggest challenge is the fact that our son is on SSI, a form of social security, and it seems they are doing anything possible to keep him from getting the cash and the medical benefits he receives. (Trust me, the cash isn't enough to put gas in our vehicle all month!) The insurance he has is through the state, here it's Oregon Health Plan, and I'm very disappointed the care he gets through it. They will only cover one PT visit a month instead of once a week like his doctor prescribed, something we have been fighting for over 3 years. He just had surgery and they only allowed 8-10 OT visits and then he was done. 4. Yes, my son received OT for his CP. He received it from the time he was 3 years old until about 6 years old. At that time he was tested and we were told that he no longer qualified for OT. I know rules are in place to keep people honest, but my son wasn't potty trained until almost 8 years old, he still has problems snapping his pants, he can't button at all yet. When he was in OT the goals were to get him desensitized since he had sensory issues; hated baths, getting hair washed, getting finger/toe nails clipped. It affected his head mainly and he has outgrown the majority of it. The only thing he still can't stand is anything in his ears (thermometers, ear tests) and water in his face. Like I said CP is extremely broad in the range of this disability so I think it depends on the patient you are dealing with at the time in order to figure out what will work and what won't work. 
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Wen I was in school, I had to take physical therapy,ocupational therapy and speech therapy, And aqua therapy is a must (loosens up stiff muscles and joints/muscles) Very helpful. And when I was born, my mom has told that when the dovtor diagnosed it, they called it, central nervous system disorder, But, cp was just easier to say, cause cp and cns are the same thing.
Like Mommie2co said they had sighned up for this, But, like the old saying goes exspect the unexspected, And there is a web site that tells You all about cp and what to expect and that web site is:www.ninds.nih.gov another good web site is, www.ucp.org also ther is a supplement that may be helpful, and is helpful, I take it myself it's called "viatrin' that's at www.progressivehealth.com and I found that through google.com I hope this helps, and good luvk
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I am currently a part-time student looking to become an Educational Assistant so I hope no one minds me droping by once in a while. I have read some tof he entries and it is truly heart breaking. The more and more I talk to people, the more everyone has been touched by a something......my family's something is Huntington Disease so I appreciate the challenges that each of you face. Topic for another day!
Since I am trying to become an Educational Assistant, I am wondering about any of your experiences within the school setting. Have you had an EA? If yes, could you tell me if the EA was helpful. If yes, what does she do that is helpful. Any insights would be a great help for my project on CP and my future job. Thanks for your time.
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