|
|
|
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:
Lynne, mom to Nikki 6, One of my favorites is " what is wrong with her?" And my answer typically is, " what do you mean? Oh! My goodness! I don't see anything wrong with her! You better look again!" it seems to make those few feel VERY stupid! Diane, mom to Josh, 5, When strangers stare I just say. Yes he is beautiful isn’t he, is that why you’re staring because you have never seen such a beautiful child. Barb, mom to Kayda (December 2, 1988-June 23, 2000) When we were crossing the street one day at Disneyland, a little girl came up to my friend and said "what's wrong with her?" pointing to Kayda. When she told me that I replied "there's nothing wrong with her, she's Kayda". One time I was getting Kayda in or out of the van at a mall when we still had the portable ramps this elderly couple just stopped and stared at us and then started clapping. I never knew why. If someone was really rude and staring when we were out I would say something like "hey Kayda, no one taught that person any manners did they?" I'm bad. Another time, though, again, we were in the parking lot at a mall and I was getting Kayda into the van. A young boy (maybe 8 or 10 years old) came up and started asking my mom questions about the lift and tie downs and also about Kayda. He was very respectful and clearly wanted to know. It was also interesting to hear my mom answer the questions about what Kayda knew and did. If someone truly wanted to know about her I had no trouble at all answering questions.
I did find it difficult though each time a new piece of equipment or oddity was added; like her being in giant spread eagle casts on a very wide chair, oxygen, or her brace that went on the outside of her clothes. I had to steel myself against extra stares to start with. Eventually with each new thing I just carried on with whatever. Agnes, mom to Rachel, 10, If anyone stares which isn’t very often I just walk on as if the person staring is invisible. Mostly everyone around here treats Rachel like a normal person and always says hello Rachel when we are out and about. Lisa, mom to Noah (2 ½) We often get children looking at Noah in his wheelchair and saying to their parents 'what is wrong with that baby'? and their parents look very embarrassed and tell them to be quiet. I try to catch their eye and say to the child that his muscles don't work properly so he has a special chair to help him and they are happy with that. We have had more good experiences than bad and often get people just smiling at us and making comments about Noah like 'he is beautiful' or they ask how old he is etc. I am pretty open about everything including tube feeding in public and always get people looking, but have found that it has turned out positive because Noah has some little girl friends at church, and whenever I feed him they come over and want to help by holding the tube and they always say 'Noah is having a drink in his tummy' and think it is really cool. They also like to push him in his wheelchair (supervised of course - they are only 2!). Angela, mom to Chrissy 3 ½, I hear the comment "what’s wrong with her?" a lot too and I have to say it is one of my pet peeves! If it is a child asking, I usually smile and try to say as nicely as possible "Nothing is wrong with her." They always look at me funny, so then I add "God made her differently than you, that’s all." However, if it is an adult, I usually say something like, "Nothing is WRONG with her. But she does have cerebral palsy (it is usually too hard to explain schizencephaly without a long drawn out conversation, and most of the time the people asking the question in the first place are not someone I want to waste my time talking to)! On the other hand, if someone is genuinely interested in Chrissy and is more tactful in asking about her, I will take the time to explain her condition, while still making it clear we consider her to be perfect just as she is! Sometimes it is a hard balancing act - trying to educate people at the same time as keeping Chrissy's dignity and right to privacy as a priority. The worst incident for me was when a little girl at church came up and said "Ewwww...what happened to HER?" I was so angry, not just at the child (who was old enough to know better), but at the parents for not teaching her any manners! I told her quickly enough that nothing happened to Chrissy, that she was perfect in Heavenly Father's eyes, and that maybe she should ask her parents to explain to her about disabled people and how to speak nicely about them and to them. She left pretty quickly! Barbara, mom to Michelle, 5 ½, In our case, I had already been warned by the adoption people when we adopted our kids from Africa, ie., that people would stare at us, so I got used to ignoring stares. When Michelle was smaller people always thought she was a doll so when she moved, they were startled. I have only had one person come right out and ask what is wrong with her. I could sense that he didn't know any other way of asking, and he was interested in her, so I explained. Michelle is still pretty small and until recently, people who were not medical often didn't know she wasn't just a baby. They would just say, "Oh, she's sleepy”. We just got a real wheelchair and I had a hard time in my head about it. It was the first time that I knew that everyone we met would know she was disabled and I was afraid of their reactions. I usually try to forestall the questions by introducing her to anyone who has stopped to talk to us. I say, "This is Michelle. She really likes it when you talk to her, but she can't see you very well", because they usually try to do visual things to attract her attention. I have had lots of advice from our PT. She says that people don't know how to approach people in wheelchairs, so you have to make them comfortable in talking to disabled kids. She suggests tying balloons or similar items to the chair so that it gives people an opening to talk. Dru, mom to Logan 4, Facing Strangers--depends on the stranger. If handled the right way by all parties, this can be a great experience. All too often, though, someone is being rude or even actually showing distaste about Logan--as cute as he is, it's hard to believe that someone would find him repulsive, but it happens from time to time. Angela pretty much answered this question like I would--people ask, What's wrong with HIM? And I invariably answer NOTHING. And then I go about my business. But if someone says hello to Logan and asks kindly what is wrong with him, well, that's a different story. I explain what's wrong with him and how amazing he is, and how he's the heart of our home. He is the very core of our family, my strength, my ROCK. I think it's important for people who are truly seeking information and not expressing disdain to understand that he's loved and wanted and wonderful, not defective. I always tell those kinds of people that his spirit is whole and amazing; it's just his physical body that doesn't work right. Oh Barb, about that couple clapping for you--reminds me of the last time we were at Disney World. We posed with some of the characters at Epcot while a total stranger offered to take our picture. I get in position, make sure all the kids (6 of 'em) look good, then I look up and smile for the picture. Well, about 15 flashes went off, as we had drawn a crowd and they were ALL taking our picture! Then some guy clapped and shouted "BRAVO!!" You know, you just have to laugh and move on...one of the most important qualities to develop though this is a sense of humor!! April, mom to Chris (September 23, 1988-February 1, 2003) Boy oh boy do I have a book to write on RUDE people. When I was eating lunch one day, a lady got up, threw her lunch away and proceeded to tell me that he (meaning Chris) turned her stomach. I was too speechless for that one. But, through the years, I got REAL bold. If someone was staring at Chris I would say this wasn't a freak show or I would comment on an eyesore about them. Such as a big nose or weight watchers. Saying no one was perfect. Hollie, mom to Matthew (June 14, 1999-April 9, 2004) With Matthew most people always thought he was asleep if we where carrying him. The ones that stared I would just smile at them and keep going but most asked questions and I'm always happy to tell them and most would play with him and talk to him. The only people I ever had a problem with was older ladies (60s or so) and only a few would look at Matthew and me like we made them sick. The first time it happened I was bad I went off on the women and she actually said sorry then ran off when I was done. But most all loved him kids and all I did have one young boy ask me if Matthew was sick and I told him what was wrong with him and after that every time he’d see Matthew he come up and talk to him and play with him. But the stares and what others thought never got to me much cause it didn’t matter what they thought only me and his family and friends. We all loved him so he didn’t need them few closed mined f**** (sorry :) Dee Dee, mom to Elizabeth, 15, I love it when we go out in public. People stare at Elizabeth and then they smile at me. Our youngest son loves to push her in her chair because when people stare, he tells them to quit and ask " My mom " what's wrong with her. I use to walk our older daughter home from school everyday and we had all the kids ask what's wrong with her. I just tell them well, God made all kids Special but she is even more special. Why they ask, and I tell them that God gave them a Brain to think, talk, walk, eat and even play. She can't do any of that but she can hear you very well and she loves to hear people talk. They would get used to her and say Hello every afternoon and they would even hug her or rub her hand. After our daughter got into Middle School and then High School, all the kids still know Elizabeth and they tell their parents that Elizabeth is still with us and she has grown so much. As for shopping now a days, no one asks me what's wrong with her but I hear little kids whisper to their parents what's wrong with her while we are in the check out line. I'll turn around and say, She is a Special child from God and he wanted to make her be the best child ever. They smile and then say hi to her. Kay mom to Blaine, 3, Facing strangers- I usually don't get that many stares from adults, but some children as "what happened" which I think is a normal question for a child. Blaine's arm was amputated when he was a month old, and one day I had to go to the pharmacy to get him so medicine and my brother and his family were down from LA. So I took my nephew, then 5, went with me. He asked what we were going for and I told him some medicine for Blaine, he asked me so innocently, "Will it make his arm grow back?" and I said, "No." He said, "Well maybe someday huh?" I said, "Maybe." It was so sweet and innocent. But the worst thing ever said to me was by a stranger this was right after we found out that he was having severe muscle spasms and me and another mother were down stairs smoking at the hospital, and a stranger approached us, because we were both crying and upset and the other mother had told her what was wrong and the lady said to us, "I know how you both feel, my cat just died." It took all I had not to just stand up and hit her square in the mouth. Dani, mom to Paul (July 26, 1993-May 14, 2003) When it came to strangers it depended on the situation and how I reacted. Most people were very kind but felt sorry for me- which i hate with a passion. Kids would stare at times and their parents really didn't pay attention but i still took ^Pauli^ out in public very often, He loved to go play baseball, bowling, walk around the mall and hear all the noise! I surround us with other disabled kids in our community. Kids in my complex have always loved ^Pauli^. One little girl still asks questions about Pauli and tells me she misses him. My little niece loved him to death! They had a special bond even though she is so little- two. Gisela, grandmother to Megan, 7, I never have ever been at all bothered about taking Megan anywhere and when strangers stare I just don’t really think about it as she is just beautiful and I am the luckiest grandma to have her. I have only reacted once on a bad day when some guy was really leaning over the chair staring at her, and I did ask he if he was close enough or would he like to get in with her. Anna was so embarrassed when I said it at the time but is now of the same opinion as me. I have to make one more comment on the subject. I suppose I am very lucky in the community we live. the close is full of children around Megan’s age and they are brilliant with her . This week end was fine weather and they were all out playing on their bikes and things but they always come to knock for Megan to play. 2 of them fetch a large mattress out from some where and layed it on the drive for her with a huge brolly to shade her from the sun and they all sat on this mattress reading, talking and singing to her; actually jostling for spaces to get on there with her. The eldest girl was supervising the boys on their bikes saying just keep over there and be careful Megan is down here. So funny. It is just wonderful they accept Megan as she is no frills. But just think what she is giving to those kids, they will never have any hang ups about a disabled person because they will have a memory of a wonderful friend who just was not able to do all they did. but it didn’t matter. Renee, mom to Brennan, 2, honestly have to say that I haven't had to deal with much of that yet, Brennan is such a little guy that I'm sure people think he's way younger than his age. But I'm sure that if I carry him and he happens to hyperextend then people may look and wonder about him. I remember when we went to the zoo last year and one of the workers at the cafe we were eating at asked what's wrong with him. She was a young girl with a loud voice but she almost looked as though she had Downs Syndrome. Anyway, I just told her what he had and she said that his head looked larger than his body and she was wondering if he was a dwarf or something! So I thought.. Okay...and I just said No and tried to explain a little of his condition. Well, at least now his head is better proportioned to his body size, but even back then he looked perfectly fine to us! :) Rehan, Mom to Tyson (August 2, 2002-March 27, 2003) Facing strangers: I don't remember much of taking Tyson in public I always seemed to be in a daze (lack of sleep) I remember leaving the hospital with Tyson on oxygen and this old man asking me if I strangled him after he came. Then he went on to tell me there were several people who would have adopted him before I screwed him up. I just cried didn't know what to say. The second thing I remember was a little girl about 8 or 9 came up and told me Tyson was ugly. I shouldn't have him outside where normal people can see him. I looked at her mother in disbelief and the mom said she's right. So I told the little girl, "I'll tell you the same thing I tell my daughter, with an ugly soul you can never be pretty. You might be the prettiest girl in world but if you're hateful who will be around to share your beauty? Her mother grabbed her arm and left. Donna, Mom to Joshua The ignorant people used to stare at Josh in the shopping centre as if he was some sort of freak show. I used to glare at them back and hold my head up high and push Josh in his wheel chair with pride. Some people would find the courage to approach us and tell me how beautiful my boy was and talk to him. One elderly couple met Josh and his father on the train, the couple were so touched by Josh they were in tears. Josh's big blue eyes attracted people’s undivided attention.
Other pages in this section:
|
|
Subscribe to the
Hydranencephaly Mailing list
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
|
