Thursday, December 21, 2006

Why Didn't the Doctors Tell Me She Was Contagious?

My daughter, Ashley, is almost eight years old. She was born 14 weeks prematurely, and as a result, has been seen by many, many doctors. Her pediatrician never told me that what she had was contagious, and neither did her neurologist, her endocrinologist, her neurosurgeon, her dermatologist, her ear/nose/throat specialists or her opthamologist. But they certainly must have been wrong, and I intend to ask them why.

You see, Ashley is deafblind. She also has seizure disorder and a rare disease called juvenile xanthogranulomas. That disease has caused two brain tumors, both of which have been successfully removed. Because of her deafblindness, she uses her hands to communicate (tactile sign language). I have been teaching her American Sign Language (ASL), the standard United States sign language, so that she can communicate with anyone who knows or will learn sign language. And, use it she does!

Like most seven year olds, Ashley can have quite a sassy mouth, or should I say hands, on her. She argues with me, whines with the best of kids, and has been known to make rude comments behind my back. But, she also can be quite polite, thanking people who do nice things for her, saying ‘excuse me’ (followed by raucous laughter) when she burps, saying ‘please’ when she is making a request, and most importantly of all, telling me she loves me. The problem of her contagiousness, though, appears when she heads off to school each day.

So as to not expose non-contagious children to her contagiousness, Ashley rides a special bus to school each day. The only other children on that bus are also apparently contagious. In addition to riding the special bus, the children are also brought to school earlier and, near the end of the school day, they also board their bus about 10 minutes before the non-contagious children board theirs. This appears to be a safety precaution practiced by many schools attended by contagious children.

When Ashley arrives at school, she is kept in a room with those other children who are contagious. I guess the teacher and other adults in the room have been inoculated because they don’t seem to mind being in the room with all the contagious children. The other teachers in the school, however, must be waiting to be inoculated because they don’t seem to want Ashley in their classroom. I’m sure those teachers as well as the school principal and other administrators don’t want their non-contagious kids to catch anything from Ashley and her friends in the special classroom. Although they do occasionally invite Ashley into their classroom, she must be isolated from the non-contagious kids. The other kids appear wary of her, and even if one is brave enough to approach Ashley, the teacher and other adults will usually coax the brave child back into the non-contagious group. I must say, though, that the teachers of the non-contagious children did allow the children to make get-well cards for Ashley when she was in the hospital last year.

Ashley is also allowed to participate in some of the same school activities in which the non-contagious children participate, as long as special precautions are taken. For example, at a recent PTA program, the non-contagious first and second graders, as well as Ashley, were going to sing a medley of winter songs. As could be expected, the audience was full of parents, grandparents, siblings, and friends of the non-contagious children, all waiting anxiously to see their darlings perform. I was there with my other children and a family friend. At the appointed time, the lights dimmed, and all the children filed into the auditorium and headed to the stage. Ashley was with them, but protected from sharing her disease with the other children by the presence of an adult holding her hand. As the non-contagious children lined up on the stage, Ashley was led off to the right of the stage, approximately 4 feet away from the other children. I’m sure Ashley’s adult assistant felt that was an appropriate distance for reducing the other children’s exposure to Ashley’s contagiousness.

Ashley was allowed to sit on the stage through one song. I guess the many adults in the room felt the longer she stayed there the greater the chance that their non-contagious children might catch whatever Ashley had. At the end of the first song, Ashley’s adult assistant led her off the stage. The sea of parents videotaping their children parted, and as Ashley and her assistant walked to the back of the room, one of the parents patted Ashley’s adult assistant on the back and said ‘Good job!” I’m sure they were grateful that the assistant had the foresight to limit the contagious atmosphere.

I also thought that as Ashley’s mother, I must have some sort of built-in immunity to her contagiousness. I don’t mind being around her at all. In fact, I am never happier than when she has her arms wrapped tightly around me and is showering me with her sloppy kisses. I guess I am being na├»ve, though. I truly must have caught whatever she has because now the school staff as well as the school administrators don’t want to talk to me. When Ashley passed along her contagiousness to me, it must have increased its likelihood of spreading, because the special education director for the school district won’t even speak to me on the phone. I am very sorry that I unwittingly exposed them to this contagiousness.

In fact, now that I think about it, I better warn a lot more people – the people at Ashley’s afterschool program who also enjoy her hugs and kisses as much as I do; the children at the afterschool program who don’t know they should isolate themselves from Ashley and not let her play with their toys; my family and friends who have been exposed to Ashley for a long time now. They must be very, very sick. Then there are the high school volunteers who look forward to taking Ashley in the pool at the YMCA each Saturday morning, and the lady at McDonald’s who loves to greet Ashley with a huge hug and a bag of French fries, and the therapists at Children’s Hospital who push her on the giant swing until she is laughing so hard that she falls off, or my friend’s children who touch the same toys that Ashley touches and who actually sit at my dining room table and eat meals with her.

But first and foremost, I’m calling each and every one of those doctors and asking them why they didn’t warn me that Ashley was so contagious. Perhaps I could have done something sooner. Or, then again, maybe not……


Anonymous said...

Thanks for this wonderful post. I too was a contagious child. As a matter of fact I was so contagious that I wasn't allowed in the same school building as the older schools in the nieghboorhood. Now that I'm in college with non-contagious adults, who knows how many people I'm contaminating.

Dave Hingsburger said...

Thanks for bringing this post to my attention over at Rolling Around in My Head ... you are right the situation is so similar to what just happened. I think you should forward this blog to that school and choir director.

Ashley's Mom said...

Dave, soon after this happened, I sent the story to Jonathan Mooney, a young writer. He had published a book titled Learning Outside the Lines, and was working on another book titled Short Bus Stories. Mr. Mooney traveled the US in a modified short bus and visited 13 families - one of them mine - and included the stories in his book. If you can get your hands on a copy, my daughter's chapter is titled "How To Curse In Sign Language."

Louise said...

I just came this way from Dave Hingsburger's blog. I just want to say - from her photo, your daughter looks very beautiful. And I'm glad she can curse!

Tamara said...

I just came here from Dave's blog too. This post is brilliant. Your daughter is beautiful. I agree with Louise; I'm glad your daughter can curse! :-)