Help needed for college assignment on CP.

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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ruthmc
Posts: 3
Joined: Sat Nov 06, 2010 10:24 am

Help needed for college assignment on CP.

Postby ruthmc » Sat Nov 06, 2010 10:32 am

I am doing an assignment on all aspects of CP. One of the areas we have been asked to look at is
"The Practical and emotional implications of having a child with CP"

As I don't have a child with CP I can only guess at the implications involved. I have thought along the lines of finacial implications, Isolation, Adapting houses, Worry etc. but I was hoping that I could get the perspective of some parents out there.

What do you feel are the biggest implications on a family with a child with CP? and if you could explain briefly why, that would be a great help.

Thanks in advance for all your help.

Ruth McHale.

kristy77
Posts: 12
Joined: Fri Aug 13, 2010 6:54 pm

Re: Help needed for college assignment on CP.

Postby kristy77 » Sun Nov 07, 2010 2:55 pm

I have 4 children, with my 4th (currently 15 months old) recently diagnosed with moderate CP.
Trying to pay enough attention to our other children is hard. I am often feeling worried that my other kids will think I am 'favouritising' our baby. I homeschool my kids, so they are always being carted around to all of our bub's therapy appointments.
Also, not knowing if some behavours are as a result of the CP, or just normal bad behavour that we need to deal with. Such as night waking. With our other kids we did control crying and if they woke during the night after 6 months old, we wouldn't feed them - just resettle. But with our bub with CP, she will sleep through the night for a week, then wake really upset. Because I've heard she may be suffering pain as a result of stiff joints, I always offer her a breastfeed (as breastmilk is proven to be a pain relief like panadol).
The not knowing what the future holds, how much improvement our bub may or may not have with the CP, is often an ongoing concern.
The grieving process of having a baby you assumed would be 'normal and healthy', but have now found that is not the case. Grieving for myself, my family, and my baby.

Hope that helps. I'm happy to answer any other questions.
Kristy.

ruthmc
Posts: 3
Joined: Sat Nov 06, 2010 10:24 am

Re: Help needed for college assignment on CP.

Postby ruthmc » Sun Nov 07, 2010 3:49 pm

Thank you so much. That was really helpful. On other forums I got great answers on the practical implications so it was really helpful to get an input on the emotional implications.
Thanks again for your help.

Ruth.

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LeaciesMum
Posts: 31
Joined: Sun Feb 28, 2010 3:30 am
Location: Melbourne, Australia

Re: Help needed for college assignment on CP.

Postby LeaciesMum » Sun Nov 07, 2010 4:07 pm

Our daughter who has CP is our 5th and last child (my second husbands second child) and I don't really think we went through a grieving process. I sort of knew she had it long before the official diagnosis, but when it comes from a doctors mouth it's still a shock. I cried for a few minutes and got down for about an hour but then my husband (my rock) said to me, "She's got a life sentence, not a death sentence." and this snapped me out of it.

At first we went through the pity for her stage, but even this we've overcome. She 4 now and only just learing how different she is from other kids and she's accepting. Everything she does or cannot do she know's no different so to her she doesn't really realise what she's missing out on.

I was doing Family Day Care in my own home when she was born and it was hard watching the kids that were younger than her going through their milestones at the appropriate ages, it was also very hard having to take so much time off work to attend the many hospital appointments. I am very lucky though because my ECIS visits my home to do physio and occupational therapy. Even still I have given up my work because we were needing to take too much time off.

Equipement is VERY expensive, once you put the term 'disability' on an item it more than quadruples in price. My daughter has 2 Kelly chairs @ $750 each, a dynamic standing frame @ $800, a Flamingo shower chair @ $1700, a adjustable bench seat @ $600, a David Hart Walker @ $12,000, a Panther Wheelchair @ $7,500, and now we are looking into buying a reverse walker @ approx $800-$1,000. We also have on loan a standing ladder and stool and 2 different therapy balls. We've had to buy an expensive mattress to avoid pressure spots.

We've also had a ramp put up to our back door and will shortly have to have one put up to our front door. Eventually we will have to remodel our bathroom and toilet room so that she can use it more freely. We also have to purchase a new car that we can have a wheelchair lift/ramp fitted to it. This addaption can cost between $12,000 to $32,000 (this is in Australia). Only X amount of the cost of aids and equipment is covered by the government, the rest we have to supply ourselves or apply for funding from the numerous charities.

As for isolation, the only issue for us is how hard it is to get Leacie and her equipment into and out of the car. There was one day when I had several different things I had to do and first finding a disabled parking spot was difficult, then getting the wheelchair out, putting it together, getting Aleacia out, doing the chore then putting Aleacia back in the car, pulling the chair down again and putting it back in the car. These chairs aren't light, doing that 6 times in one day by night fall my back is killing me (even using safe lifting methods).

Going anywhere takes at least half an hour more preparation time and this can be very difficult when you have more than one child. School drop off and pick up for the older siblings is very difficult when you have to get the disabled child out each time.

I have found that by having a child with CP it's opened a whole new world for us, we're more understanding of what other parents go through, we have met the most amazing people and children we never would have before, my other children are more loving and accepting of not only our daughter but of other people with disabilities. My 6yo son will help Aleacia back up to a crawling position every time she falls flat, he'll get her toys, drinks, her hat etc etc without question because he knows she can't do it. I believe my kids are better people for having a little sister with CP.

I do worry about her future sometimes, but it gets quite overwhelming so I try to stick to living each day as it comes.

Hope that has helped you a bit with our situation.
* A Strong Mind Can Compensate For A Weak Body *

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ruthmc
Posts: 3
Joined: Sat Nov 06, 2010 10:24 am

Re: Help needed for college assignment on CP.

Postby ruthmc » Mon Nov 08, 2010 7:45 am

Thanks so much for that insight into your life. It has been a great help also.

It is so nice to hear that with all the extra work you are still so positive and how your other children have learned from your situation.

Thanks again.
Ruth.