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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Taking Care of
You: A large part of our adjustment to having a child with special needs is how our family members react to or treat our children. Nita, Grandmother to Jacob, age 18 months: Family members are sometimes funny to watch. Funny for lack of a better term. There were more than 25 people there when he was born, everyone, even my ex and his family, all to see if he was going to even breath. He came out screamin and peein! I wouldn't really be able to say they are stand-offish, but only twice has anyone other than us kept him. My sister cried the whole time he was with her one afternoon and she has never and will never consider it again. When he was newborn he looked completely normal, but as he has gotten older and bigger (not much, 18mon=19lbs)you can definitely tell there is something different. All family functions have always been at my house, and while he is in the middle of all the commotion and they will stop and talk to him, only a few of them will attempt to hold him. This drives his mother crazy and I just tell her so what. He's our baby and believe me, he gets plenty of lap time-usually from the time I get finished with dinner to the time he goes to sleep, he's in my lap. They are afraid they will hurt him and sometimes he stiffens when they try to put him on their shoulder so they think they are upsetting him and sometimes they do. I think he can feel their tension. He will only lay his head on my shoulder, no one else. Hollie, mom to Matthew (June 14, 1999-April 9, 2004) With Matthew family and friends all treated him like a normal baby. No one cared he was disabled. No one ever had a problem with it. There were a few that was scared to be alone with him for more then a hour cause they thought something might happen and they wouldn’t know what to do. Even my uncle Jimmy that hated me loved Matthew. Sandy, mom to Jonathan, 18 months, My family thinks I'm insane that I put myself thru this on a daily basis. After all I could have an easy life if I wanted it. Who says I want it. I love what I do and I wouldn't give any of my babies up for any reason. My friends love my kids and have been amazed by how they progress. I think Jonathan amazes them more than any of my kids. No one can figure out how a child lives without a brain. It has been a learning experience for many people. He has humbled many people and brought them to their knees. Barbara, mom to Michelle, age 5, I think that my funniest experience was with my uncle. He knew that she had problems when we adopted her, and I thought he knew her diagnosis. I had him hold her when she was tiny, but she was very lethargic because her shunt wasn't working, and I had her swaddled in a blanket. He doesn't live near us and so he doesn't see her often though we talk about her as we do about the other kids in the family. Well, once when he came to visit and Michelle was doing well, smiling and moving her arms and legs, he said to me very seriously," I didn't know that she even had arms and legs"! I thought to myself, I sure would have asked, or at least looked under the blanket, if I'd had any doubts! Well, I guess he accepted her no matter what she might have been missing. My biggest problem now with friends is that as Michelle has gotten older and developed more problems, they would like to help me but feel very afraid that they wouldn't know what to do to take care of her. I understand, but I'm glad that they tell me that they would like to take care of her if they could. Lisa, mom to Noah, 2 ½, We have had a lot of bad experiences with family members. Aaron's family really doesn’t even acknowledge Noah much. They hardly visit and when they do they look at Noah on the floor, or wherever he is and don’t even say hello to him. They sometimes ask how he is and we might tell them something funny that he did (like yell at us to get picked up or something) and they seem so shocked that he knows how to do that. We only really see Aaron's grandparents and aunts and uncles at Christmas time and every year they seem to have someone new there for breakfast and we walk in with the boys and his grandparents always go 'this is poor little Noah - he is a very sick little boy - he can't see or hear and gets sick all the time, poor little thing. He has to be fed through a tube'. It makes us so angry. We of course correct them, but really we are wasting our time as they cant see the positive side of Noah and how wonderful he is, so we just have given up now and figure it is their loss for not knowing him. My parents love Noah but have a hard time dealing with him having hydran. Often when Noah is out with us he is having a sleep (just his usual afternoon sleep) and my Dad will often say 'he sleeps his life away' which also makes me angry as he hardly sees him and just because he sees him asleep sometimes doesn’t mean he is sleeping his life away. He cant see the personality that he has and the things he can do. He seems to dwell on the negative all the time too. We have had similar experiences with some friends - actually a lot of friends. They always come up to us and go in their sympathetic voice 'how's Noah doing?' and it is sooo frustrating as they are acting like it is the end of the world and like Noah is on his death bed even when he is perfectly well. I just try to be positive and say 'he is great' or something like that and change the subject as it seems that people just focus on him and his disabilities all the time rather than his abilities. We always get comments from friends saying 'poor thing' when we tube feed him, because they feel he is missing out on a good experience, and I always try to say that to them that it is a good thing as if he was being fed orally he would be tired, miserable and aspirating, but sometimes it is hard for people to see that certain things are good rather than a negative thing. We do have some friends who are very positive about Noah and love him just as much as we do. They treat him like any other child and hold his hand and talk to him. I actually find that it is people like his physio and teacher who are the most positive as they have worked with disabled kids before and can see that all the little things that Noah does is amazing. I think the thing is with negative friends and family is that they don’t spend enough time around him to see his personality and to see that he has a lot more good times at the moment than bad. Nita's email reminded me of something else about family members. Whenever I give Noah to people to hold he usually ends up yelling and arching because he doesn’t like it, and then when I take him he is happy. They get really upset about this, but I have shown them over and over how to hold him so he is comfortable and sitting in a good position, but they usually end up holding him how it is comfortable for THEM and of course this makes Noah upset. I find now that they sometimes avoid picking him up as they know he will most likely cry on them which is sad, because if they just listened and/or took more time to learn about him and try different things they could also make him happy and comfortable to be with them. Barb, mom to Kayda (December 2, 1988-June 23, 2000), My family’s reactions to Kayda were mixed. My grandmother started out to be scared of her but all it took was one smile from Kayda to melt her heart. I’ll never forget the radiant look on my grandmothers face when she said “she smiled at me”. My Dad & Stepmother, on the other hand, totally ignored Kayda. They never said hello to her, never even talked about her. It was like she didn’t exist; in the meantime I was in the other room bathing or cleaning up vomit from a child who didn’t exist. After my stepmother died in 1998, I thought maybe I could have a better relationship with my Dad so went to where he lives for a visit with Kayda. One night my Dad admitted to me that Kayda wasn’t the kind of grandchild he wanted. Another night we went over to a relative of my stepmothers’ so I could check email. I went into another room. The lady started to put Kayda over in front of the TV and I heard my dad say, “don’t worry about her, she’s brain dead.” I just about flipped. Needless to say, I haven’t gone to visit him since. He was all hurt that I didn’t contact him when she died but I just wasn’t in any state to put up with someone who thought my child was worthless as she was “brain dead”. He’s wanted to see Trevor but I don’t think that he realizes that Trevor has the same difficulties and needs as Kayda did. I don’t need to be told that Trevor isn’t the right kind of Grandchild either. My mom, though, although she doesn’t really feel she’s grandmother material has been great. She’s always talked to both children and shown an interest in them. My mom’s brother & sister in law though, thought that it was a waste of government money keeping Kayda alive and providing her with expensive braces, sending her to school, etc. They never did tell us what we supposed to do, given that she wasn’t on any life support machines to turn off. I just carry on and love my kids and like others, if my family isn’t comfortable with my kids it’s their loss not ours. With friends, with both Kayda & Trevor, any that weren’t comfortable with them at first were immediately won over with a smile. Other pages in this section: |
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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