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Cerebral Palsy and Family |
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Communicating with friends and family You can say to your friends and family, “You know what? I’m really going through this situation. I don’t know what’s going to happen. You know, I just want to let you know what’s going on. I might not answer my cell phone and explain it fifteen times, but I’m just letting you know.” So you can say those kinds of things to people and that will help you out. Sometimes we feel like we are obligated to tell everybody everything that’s going on and sometimes we don’t know what’s going on ourselves—we can’t really grasp it. -Mother Maintaining normalcy with in-home nursing I wrote a household guideline form that’s about five pages long for our nurses and therapists. I have a little spiel about confidentiality. You know that we have no privacy, so please don’t place us in an embarrassing situation. Also disciplining our other three children who live in the house--it’s not up to the nurses. It’s up to me and their father. Things like people just walking right into the house without knocking and we don’t know they are there until we turn around. I find that a nurse or a therapist will come one or two times and then think they can just walk right in without ringing the bell or knocking at the door. So here, in the household guidelines, I have it clearly stated: please ring the bell and wait for someone to answer it. -Mother Having nursing come into our home was a big change. That’s a big thing that you have to adapt to because you go from privacy to not having privacy in a sense for a certain amount of hours of the day. You don’t know these people, and they come in to help you. We were very appreciative, and still are of course, but that’s a big change. It would be a big change for anyone. -Mother On Friday nights we have a little family night thing. Last week we all went out to dinner for a birthday. Then we came back and opened presents and stuff like that. The week before, we all watched a movie here at home that we all voted on. And this week is game week, so we will play games at the table. And that’s the thing--I have to set up activities that everybody can do so Sarah can participate in them. -Mother Kayla has the condition. She has the actual CP, but as a family, we all do too, because we all share her pain, her joy, and her limitations. Because of her limitations, we’re limited, but I don’t want to say that in a negative way. It’s just that we may not be able to do things as other families do, but we’ll do the same things, just with modifications. So as a family, we have CP. And that’s okay. -Mother Has it made your marriage stronger The one question people always ask is, “Has it made your marriage stronger?” and they’ve asked from the first two years, and I always say, “I’m not a psychologist, but you know what? It doesn’t make your marriage stronger, but you better be sure you had a good marriage before any of this happened because all it does is test it. It doesn’t make it stronger, it just keeps testing it and testing it and testing it.” That’s all it does. Sleepless nights, worrying, the meds, sleeping arrangements… -Father
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated:April 26, 2009 |
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