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School
I worry about school, and chicken pox and everything that he can get from other children. I don’t want to be paranoid or afraid to take my child anywhere or to let people touch him. That is probably my biggest concern.
The only thing I mention to people about my son’s transplant is that he is immunosuppressed. I tell them that because of this, if they know of someone who he’s going to be with who has the flu or something they should just let me know. It doesn’t mean that the child has to not show up to the place where my son might be, and it doesn’t mean that my son can’t show up. What I did was that I asked friends and family and other people he comes in contact with, “If you know of some illness going around, just let me know.” And people do- someone called and let me know that there was measles going around and people have called about some other things. Then, on a case-by-case basis, I make a decision. I think for the most part my son knows how to deal with this himself, now that he’s older. He knows that if someone is sneezing or something that he should sort of remove himself, and he cleans his hands a lot. I don’t feel an overwhelming need to tell people very much.
His school was behind us 100%. He spent the first three years of high school either in the hospital or at home being tutored. Now that he’s in school they know what to watch for, and if they have even the slightest inkling that something is going wrong, they call me right away. So get the school involved; let them know exactly what is going on and what they need to do. The school should accommodate your needs, in terms of tutoring and absenteeism. Sending Kevin back to school after his transplant was actually a relief. It was his senior year— the most important year. I wanted him to enjoy his senior year at school and not at home. The school understood; we gave them a letter from the doctor stating what to watch for, and it was passed around to all of his teachers. They understood that Kevin needed to go to the nurse if he didn’t feel well.
Encourage your kid to maintain a sense of normalcy for as long as possible, which means, for a teenager in high school, staying active with friends and with school. Physical limits may hinder your ability to do so, but there are ways of staying involved. Sometimes it requires work, such as getting involved with the school on a level at which you may not have wanted to get involved. Your child has suddenly become a special needs student, and if you don’t get involved, your child’s education suffers. You need to become your child’s advocate. I’m not going to lie to you: it’s a full time job, and it sometimes can feel as though no one is listening, but you still have to persevere and make them listen. Stick to it; you have to continue to go forward, because you’re all your kid has to be heard.
She is still doing well, but you have to be aware if anyone else is sick, like her friends or teachers. You always want to know if she’s been around someone with bronchitis or chicken pox, so that you can look out for signs. I have an email relationship with the teacher, so I remind her. Or if Suzie goes to school not feeling well, I remind her: “If you think she has a fever, please, please send her down to the nurse.” Once the fever hits, she’ll get anything, so we just have to be careful.
Difficulties and heartaches included the amount of hair our son had at such an early age. The kids made fun of him so I resorted to removing the hair from his arms with Nair. I trimmed his eyebrows so they weren't quite so obvious. Also, when our son was in elementary school, he had so much gum covering his teeth that he looked toothless. It wasn't until he was 9 years old that he started having oral surgery to remove the hyperplasia. This also made him a target for ridicule by his peers. But I think the way we handled the adversities was to always reaffirm him, as any parent would do. We applauded his skills at learning songs, reading Sesame Street Books, learning to write on his own, all the things we saw him doing. We took note of and acknowledged his strengths. We did not want him growing up feeling weak or different in an unhealthy way, but unique and strong in character.
What worked for our family was being open about his condition. From pre-school to high school, we always informed the teachers and the principals about Kevin's health. We always accepted their invitations to come and share about it with his class. Children are very adaptable and like learning new things. We tried to make them "see" something wonderful in being unique. We shared information in such a way that helped our son and the children view him as special, not handicapped. We also made sure we acknowledged that each child in his class was uniquely special in their own way, too. It was our intention to help children see each other as equals, but to recognize and appreciate their differences. It helped them to talk about any unique qualities they had, after we talked about our son's condition, and they would accept him as one of their own after having a special time like this. We made poster boards with photos, and allowed children to draw pictures of doctors, hospitals, and nurses. This helped connect them all to one another, sharing in our son's experience but drawing the best conclusion, that he was not all that different from them.
School issues for us occurred in junior and senior high and now in college. Always inform the teachers and/or the school counselor about what is going on. When liver failure started he was falling asleep in class. Later, when he developed PTSD he would miss days of school and sometimes end up on home study. The school counselor tried many different routines for Nick: mornings in school and afternoons at home, and all day at home but lunch at school. They tried really hard to keep him involved at school to some degree for the social interaction. We were very candid about Nick’s liver condition and also about his later PTSD, and the teachers were very accommodating. When he went to college he registered with the disabled student department. They have a file on him and if he were to have a health issue and need to miss school they have a letter drafted to send to his professors explaining the situation. He also got a scholarship from this department at the end of his freshman year. The health center on campus has all of his records and is in contact with the hospital here so that they do the routine lab work and checkup while he is away. We informed the director of the dorm and his RA about his health condition in case of emergency, but we left it up to him as to whom else he told.
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Copyright © 2005, Children's
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. July 26, 2005 |
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