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Looking Back: What Would Have Helped? |
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I just wish I was given more information on CP than what I did get. I wish the information was more readily available. That would have been so much easier. Someone was like, “Your kid has cerebral palsy. Now you can go home.” I believe that there should be some kind of manual. It gives you something to go home with. A lot of my research I had to do on my own. A lot of times, families don’t know where to go or where to start. There are websites—but what if you don’t have a computer at home? So always just give a parent something--never leave them empty handed. Give them something tangible that they could hold on to and say, “Well ok, at least I have this information.” -Mother Redesign the exam tables we have to put our children on for their check-ups. They are narrow and too flat. Stephanie has a phobia about being laid on her back. She worries about falling off. She has to use a pillow (she uses it to put it over her face when on the table). I understand that other kids with CP have the same fears. Because of this, she can’t relax when she is on one of these exam tables. The doctors can’t get accurate measurements of what her range of motion is because she gets tight from the stress caused by these tables. -Father I would really like to be part of a group, just so I could throw out questions, frustrations, answers, just to have that mutual understanding of what life is like in a family that has cerebral palsy. -MotherI felt like nobody was listening I wish that I got the diagnosis earlier. I wish that I had a doctor that would say, “This is what’s going on and how you feel is understandable.” Instead of being told that I am a first time mother and that I don’t know how to deal with things. I was like, “you mean that when a child that cries 24/7, it is acceptable?” I just felt like nobody was listening. - MotherI felt like I was "Joe Handyman" There were so many things that came up later down the road that I could have used in my house earlier on; like something to get my child in a sitting position. Do you know how many strollers I brought out of my pocket, trial and error? I’d go to the hardware store to try to adapt equipment that I had bought. It was ridiculous. It would have been helpful if I had gotten the answers I needed earlier on, gotten the equipment that I needed to make things easier for Madison and for myself, instead of me trying to problem solve so many things. I felt like I was “Joe Handyman”. I was always trying to build something to for her to sit in, something to hold her up at the table, something . . . - Mother The important of an early diagnosis By the time we finally started getting services at about the 15th month, we were a little bit adjusted. We could’ve really, really, really used services within that first year, but the problem is, if you don’t have a diagnosis, you can’t get services. -FatherTell us all the details. They tend not to do that, and I guess they do that with good intention because the doctors that have dealt with me have been really, really nice people. They were understanding. They explained things to me and brought it down in terms so that I could understand what was going on my son’s care. Yes, I appreciate that, but at the end of the day, I still feel that they shouldn’t hide the bad stuff from us. Tell us the good and then tell us the bad—the worst scenario. Don’t hide it. -MotherIf I had to do it all over again My biggest fear is I die tomorrow with my conscience laden with guilt that I did nothing to help my son when I had the power to do so. So, ask me if I’d do it all over again if I had the time? Yes, I would. I would do it probably a little bit different. I’d probably move a little bit earlier when I saw the first signs. I’d probably high-tail it then rather than wait until it was so late. -Mother We didn't even know what questions to ask I think my husband and I both wish that prior to the surgery, somebody could have sat us down in a room away from where we see the doctors, and really helped us to evaluate what we were going need through the whole process. At that point, we didn’t even know what questions to ask. So if somebody could have taken us through a series of questions to ask…Like, do you have a way to get Justin in and out of the house with a wheelchair after the surgery because you’re going need a wheelchair for 2, 3 or 6 months? We had a wheelchair because he uses it, but we didn’t have a way for getting him in and out of the house in a wheelchair because we’ve never needed him in a wheelchair in the house before. It just wasn’t something really that we considered before. -Mother If you have friends that have been through similar surgeries, sit down with them and find out from them what questions you should ask. I think the big thing was just not having enough information about what Justin's surgery entailed. I mean, we would have loved to have maybe a piece of paper that just spelled it out for us. Tell us what the process was, what actual surgery was going to be done. Also, maybe a social worker could have come in with us and said, “These are some of the questions other people have had, and this is the way they’ve dealt with it.” We could have really used that. It took me three appointments with the surgeon to hear it three times to get to the point where I could actual explain it to my family in a laymen’s way so that they could then understand what was happening. And I think I’m an educated person, my husband has been in the health field, but you just go in a kind of anxiety that makes it hard to hold on to what surgeons are saying. -Mother What I wish someone had told me earlier That everything will be OK… -Mother
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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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