I know I’m one of those parents that some people dread. I try to be actively involved in nearly everything concerning my children. Because Cordy has never been a “one size fits most” child, I’ve had to become that parent who is usually right there to oversee things and make sure that the situation works for her.
I meet the teachers before the start of school to make sure they’re aware of my kids’ strengths and weaknesses. (And to point out important things like Cordy’s artificial dye restriction.) I like to find out ahead of time if a party will be too loud or too overwhelming, or if we need to bring our own snacks. We pack lunches for school so we know what ingredients our kids are eating. And I’m glad we have doctors who view us as partners and assume I’ve done my research on whatever we discuss, because I have, and I’m not afraid to bring up any concerns.
Yes, I’m a bit of a control freak. I’ll admit it. But many would agree that Cordy has benefited from my (“our” actually – Aaron can be pretty fierce, too) watching out for her interests. Changes we’ve made to her diet and her environment have made it possible for her to be mainstreamed and excel in school, reducing unwanted behaviors and improving focus and concentration.
Occasionally, though, I do something dumb and later regret my decision to let go a little. Last week was one of those moments. Our elementary school was hosting a flu immunization clinic for all the students, run by Columbus Public Health. Forms were sent home to grant permission. Both kids routinely get the flu vaccine, although their pediatrician usually gives it to them. They get flumist, the intranasal vaccine, instead of the flu shot, mostly because the flumist ingredients are all food grade ingredients plus one sulfa antibiotic, as opposed to the flu shot which has some more questionable ingredients (questionable for Cordy’s sensitivities) in it.
Photo credit: Jim Gathany (CDC)
Flumist is the standard vaccine for these school-based vaccine clinics now. Only those who have medical reasons to not receive the live vaccine are given the inactivated vaccine injection. (And it makes sense – as a nurse, would I rather stick a bunch of kids with needles or squirt a little liquid up their nose? I know which I’d prefer.) Our kids weren’t scheduled to see the doctor until later in the season for their checkups, so I looked over the form carefully. Flumist would be given to healthy kids – my kids are amazingly healthy, so I put my trust in the health department and signed the forms.
Well, I should have realized that would go poorly.
When I picked the kids up that day, Mira ran out and immediately told me she was sniffly because of the flumist. Then Cordy came out looking pale and pouting. Her teacher told me that she was given the flu shot instead of flumist, and she was very brave. I asked why, and was told that Cordy told the health department worker that she has autism, so they gave her the flu shot because she has a “chronic medical condition.” Wha?
Her teacher sighed and said Cordy would have received flumist instead if she would have stayed quiet. While I laughed with her teacher over Cordy’s willingness to offer up information, I was also furious with the health department.
I’m primarily angry that Columbus Public Health demonstrated poor clinical decision making. The health history/permission form that I turned in for Cordy was exactly the same as Mira’s health history – no risk factors noted. Based on the health history provided, there was no reason for Cordy to receive a different form of the vaccine. The statement of a nine year old minor does not override the health history filled out by the parent/legal guardian. At the very least, a call should have been made to verify the information, which would have given me the chance to refuse the vaccination for her based on the new information. My phone number was on the form, but I received no call.
Would they have given her a flu shot if I had marked that she was allergic to eggs and she told them she eats them all the time? Any inconsistency in the health record should be checked before choosing route of administration.
Beyond that, I’m astonished that autism is a justification for the inactivated flu shot over the live vaccine flumist. We can argue round and round over autism as neurological disorder or as a facet of neurodiversity, but you can’t consider it a chronic medical condition. Autism doesn’t cause immunosuppression or respiratory weakness. Medically, Cordy is healthier than most kids – she has a strong resistance to most viruses and rarely gets sick. There may be some children with autism who are more medically fragile, but that’s likely due to an additional diagnosis other than just autism spectrum disorder.
So the kid with sensory issues and extreme anxiety was the one who got stuck with a needle. That makes no sense to me. And while I can’t say if it’s connected or not, her behavior did seem off the next few days, and two days after the shot she acted out in a way at school that was absolutely atypical for her and shocked everyone.
I did write a complaint to Columbus Public Health and was met with a dismissive “I do apologize that this was not the experience you expected” response. (Hint: that’s not an apology.) The email then went on to tell me that they follow CDC recommendations and to remind me that I gave permission for them to do what they did, even quoting the part on the form that said “Columbus Public Health staff will decide which vaccine type is best for each child based on the health information you provide and the vaccine available.” Well, yes, I expected them to choose the vaccine based on the health information I provided. That’s precisely the problem – they didn’t do that.
I’m not trying to claim I’m totally in the right in this situation. I screwed up, and I blame myself for not questioning them first. I placed my trust in Columbus Public Health when I shouldn’t have, and I feel terrible that Cordy had to suffer through that shot when she didn’t need to. I should have been at the school when it was done or I should have not signed the form and waited to vaccinate at our pediatrician’s office, where they would give her flumist. (Apparently against the CDC recommendations?) I mistakenly thought they’d call if there were any issues.
But I still believe Columbus Public Health is partially to blame. If a child says something that doesn’t match up with what they expect to see on the health history, they should refuse to do the vaccination or at least call the parent for clarification. It wouldn’t take that long to call and check. If they want to include autism as a “chronic medical condition” they need to be more clear upfront, because I don’t consider it a chronic medical condition, and our pediatrician doesn’t, either. I also think it’s a problem that they don’t allow parents the ability to specify which vaccine type they want, or which they will not allow.
Lesson learned. Sometimes it’s OK to be that parent.
I have to say that disagree with you on this one, i.e. I disagree that you screwed up and that Columbia Public Health is only “partially” to be blame. I would say that you did the right thing by providing correct information on the form as any responsible parent would do and they are TOTALLY to blame. They acted completely unprofessionally. They should make their decision based on the information provided by a child’s parent, NOT based on what a 9 yr old tells them!! Just think of the example you gave: if she was deathly allergic to something in the shot and you signed the form stating that and then she told them she wasn’t so they went ahead and gave it to her based on what she said. Wow! What completely irresponsible and unprofessional behaviour on their part. I don’t think you’re being a control freak by complaining about this!!
And, yes, I agree with you about autism not being a chronic medical condition.
I mean Columbus, not Columbia.
I was diagnosed with Asperger’s at 4. I know it means verbal at two because I read it somewhere no clinically significant language delay’s a critical criterion. I was hyperactive as a kid, have had social grace issues, am quirky, creative and really smart. I like to make songs, stories and poems. I like crossword and Sudoku puzzles, as well as reading and watching car races on TV. I have a blog.
I agree with Lucy above. A public health nurse should NEVER take the word of a child without verifying the information with the parent. That was completely unprofessional. You should be able to truse public health services in the schools.