Talking About Children and Chronic Illness

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I had another, different post set up for this morning, but I stopped working on it for 2 reasons:

1. The Medicated Child on PBS last night.

2. Today’s NY Times Article About Robyn O’Brien, food industry conspiracy theorist and mother of a food-allergic child.

Neither of these links addresses asthma, but if you think and read about children’s health you should go visit them. In the first, FRONTLINE examines mental illness in children, bipolar disorder especially, and the 6 million U.S. children on psychiatric medication. The second link outlines O’Brien and her controversial theory that

[t]he food supply is being manipulated with additives, genetic modification, hormones and herbicides, causing increases in allergies, autism and other disorders in children. . . . Kim Severson, NY Times

You know I’m not going to sit here and try to dissect mental illness in children or the thorny issue of pediatric psychiatric prescriptions. I’m certainly not going near Ms. O’Brien’s theory, either, being neither a food allergic parent nor a person familiar with current food allergy research.

I am going to ask a question.

What’s going on with our kids? Seriously.

This isn’t the first time I’ve asked the question, as you well know, and I’m not the first person to ask it. Before you start constructing arguments with me in your heads, understand I recognize the following concepts:

1. Higher rates of chronic illness in children probably partially results from better medical technology and diagnostic tools.
As Rick points out in his fascinating post about asthma treatment history that you should go read, plenty of kids like my daughter would have died as babies years ago, before modern medical technology could diagnosis them with asthma.

2. The Internet means better exposure for all patients with chronic illness.
Of course we’re going to read and hear more about diseases like asthma, given the billions of blogs and other websites.

But, you know, concepts don’t mean very much when it’s your kid who can’t breathe, and during the emergencies you don’t really care why she’s sick–you just want her to get better, to just breathe better. You start asking the bigger questions later and looking for someone understands.

I think that’s my bigger question, but my thoughts on this aren’t organized well enough yet to do the subject justice. Here it goes, anyway.

Why does parenting a child with a chronic health problem make us feel so alone?

If millions of U.S. children have asthma, for example, why has the biggest response to this blog–through the comments and the email–been from asthma patients and parents relieved to find someone else dealing with it, too?

Why do desperate parents have to sell cookies to fund research on their kids’ rare brain tumors? I’m not kidding. Go read the link, and you’ll be disgusted, too.

Again, I’m not trying to oversimplify. Disease or chronic illness, by their very specific natures and the special lifestyle requirements and restrictions they can require, isolate you from other people not living the same way.

I think the loneliness of this kind of parenting has deeper roots, though. We’re supposed to get our kids into safe and reputable schools, help them learn how to read, expose them to culture and nature and limit the TV, and find the means to buy them what they need and a little of what they want. Somehow the emphasis on those universal parenting duties means those of us struggling with our children’s health feel sidelined.

People don’t like to talk about illness if they don’t have to. It’s not always a hopeful subject, although thankfully there are plenty of pediatric medical stories with happy endings. It’s not particularly lighthearted, either, and there’s nothing sexy about respiratory symptoms, breath tests, and body fluids.

The good news: more and more I’m seeing evidence of better research, investigative productions like the PBS one above, websites and advocacy from concerned parents (including the controversial ones), and increasing numbers of people on the Internet talking about illness and asking the important questions.

23 responses to “Talking About Children and Chronic Illness”

  1. Emily Warrick says:

    My “loneliness” comes from a little different sort. My oldest child (9) is a severe ADHD, learning disabilities, and other physological problems and my youngest (6) suffers from newly diagnosed dyslexia and anxiety. It’s sad, but I’m actually educating the teachers as to the ins and outs of their disabilities and illnesses. Trying to find the way to make sure each one learns what they’re supposed to and retains that knowledge. Absolutely dreading homework time and just praying to get through to the end of the school year and that they pass to the next grade.

    The loneliness and frustration comes from having to explain to each child why they don’t achieve some skills like little Johnny Smith or Susie Q. Why they can’t stray from their strict daily schedule. Why little Johnny Smith can go to the movies in the middle of the week and we don’t. It’s hard, and it hurts more and more as they grow up, because they’re actually realizing that they’re different no matter what I do to help them “fit in” the mold that society has created as the perfect, all around kid.

    Instead I try to point out their strengths and the positive things about their lives. Well, you know, I don’t think Johnny Smith’s mom quit her career to be home for little Johnny in the afternoons. He has to ride the bus every day, and I pick you up. I don’t think Susie Q’s mom fixes her milkshakes every afternoon.
    Everything is a routine, and we most definitely don’t change the routine. Sudden changes and variations from the routine for these children usually result in behavioral problems.

    But this is just a sample of the loneliness that I experience from my two special and precious angels.

  2. Kelly says:

    I saw this via a foxnews.com link…and thanks for the sentiments about parenting! I have two boys, one is high-functioning autism in first grade and the youngest is barely three and epileptic (no tumors, scant family history, possibly infant?) and it is HARD when you don’t know the why, much less working through things one day at a time. My friends and family had little experience with either until my children, and their stamina through testings and “episodes” are amazing. I was as careful as I could be through both pregnancies, minus the indulgence on artificial sweetners (gestational diabetic for first) so there was always the dietary issue in the back of my mind, and while I do my best now to stay away from those, I think it could be a mix of so many factors…even Divine! While I tend to not dwell on blogs…..I thank you for providing a nicely written one that spells out alot of sentiments I have felt in my own dealings with chronic health issues!

  3. Asthma Mom says:

    Hi Emily, and thanks for stopping by.
    My mom teaches third grade and loves involved parents like you–too many of her students (whether they have any issues or not) have parents that can’t even be bothered to sign their kids’ progress reports or come in for conferences…..I bet those teachers you deal with are learning a lot from you and will be able to help future students like yours better.

    That mold you speak of—I think SO many expectations for raising all-around, well-adjusted kids does make that loneliness worse. This country (I’m assuming you’re U.S.–I apologize if not) in particular is obsessed with creating that perfect childhood experience, and I can see how frustrating it would be for you and your children. They are lucky to have you, though.

    Hi Kelly, and thanks also.
    You have your hands full for sure, and I know just what you mean about the “why?” Why my kid? is a question I ask a lot, even though I know the answer is basically, Why NOT your kid?

    Anyway, I can’t imagine the stress of autism and epilepsy–I have a relative in first grade who is also autistic, and his mother really has to stay on top of so much with him.
    Thanks again!

  4. Sm3 says:

    Hi Asthma Mom,

    I can give one you my perspective of the “thorny issue of pediatric psychiatric prescriptions.”

    I have a 17 yo step-son who was diagnosed with bipolar disorder at age 7. The psychiatric community insists that early intervention is essential for these children in order for them to have any hope of becoming functioning, productive adults.

    His mother argued with the doctors, refusing to believe her son’s problems were anything more than willful bad behavior. When she couldn’t handle him, she would have him hospitalized and then take him off his meds after he was stablized and sent home. This was a cycle that happened repeatedly over the last several years.

    When my husband and I were finally able to get custody of him at age 14, his illness had become unmanageable. After repeated short-term hospitalizations, my husband eventually put him in state foster care – the only way for children to get long-term residential treatment in our state. At 6′ and over 200 lbs, he had become too large and violent to live in a family setting.

    Whether consistent treatment with psychiatric medications would have prevented this outcome, we’ll never know. As a parent, I understand how difficult the decision to treat children with such powerful medications can be. But at this point, my stepson probably has life in an institution, prison or an early grave to look forward to.

    Concerning the isolation that every parent with a chronically ill child feels, the stigma off mental illness can make this much worse. It isn’t just that people don’t understand what you’re going through, they avoid you altogether.

  5. Food Allergy mom says:

    I totally understand the “loneliness”. My daughter has a severe food allergy. It took a while before anyone in the family “got it”. Making outsiders like daycares and schools understand is even worse. She experiences the isolation frequently in school because she rarely enjoys the school parties due to all the unsafe foods that are brought in. I volunteer to be room mom just so I can have some control over what comes in that classroom.

    My son maybe high functioning autistic, but we are awaiting more evals and test results. Another example of people not understanding. He is rather large for his age anyway which makes his unusal behaviors more noticeable. Thankfully he isn’t old enough to understand why people are looking at us the way they do. My daughter is old enough to understand and she is starting to ask questions about why brother doesn’t seem to act like other little boys his age.

    My biggest concern is getting them through high school. I think that will be the roughest years for both of them since that is when so many kids seem to find their niche. By then, both of them will be completely aware of the fact that they are different. High school can be a rough place for kids who don’t totally fit into “perfect, normal kid mold”.

  6. Asthmagirl says:

    I have to chime on this as well. Although I wrestle with my own disaibility, my larger battle has been dealing with my youngest daughter’s disability.

    We knew there was something wrong before she was a year. She only weighed 16 pounds and could not sit up, much less crawl or reach. Diagnosed with a developmental delay, we went through neuro-developmental therapy for 2 years, then speech… yada yada. I was referred to developmental schools, but refused because I really felt it was more important for her to function well socially, especially within a family structure than to be segregated with other kids with disabilites (I apologize if that offends anyone). Along the way, I faced resistance from my husband, my parents my in laws… you name it. By the time I allowed her to enter Kindergarten (I held her back as long as I could so she could develop), she was evaluated as being mentally retarded. I allowed this tag to shatter me for about a year before I began to question how she could read 4 grades ahead and have no comprehension of what she had read. Between that, her inability to respond appropriately and her amazing memory (entire disney movies of dialog) I began to explore autism. Over the years, I have fought multiple battles with family, with school, with social workers… just to get her the services that she needed. Eventually, I refused to allow the school to evaluate her and instead paid for outside evaluations at Children’s hospital. Today she is a high functioning autistic, a lovely girl of 17 that adores animals and wants to be a rock star.

    All that to say, there are enough battles to fight in terms of advocating and dealing with the challenges of a child with any disability. I beat myself up for years about the car accident I was in while pregnant with her. In the end as my husband told me, some people just have kids with disabilities. The best thing I ever did (for me) was to quit questionng why and learn to offer her the best advocate possible.

    In that same vein, I could ask why I ended up with asthma. I have no family history. Currently I do not care why as I am still attempting to wrestle my asthma into some semblence of submission.

    For me, dealing with my inlaws, the teachers, the biased special ed program in my district… all of that offered little reward and was of no help to my daughter. My husband (once denial was addressed) and I simply focused on what was best for our daughter. My parents have made extra efforts to help her adjust and learn. My in laws never will because they can’t understand her. That doesn’t mean they don’t love her, they just don’t have the tools to deal with someone being different. And yes, that now includes me being an asthmatic.

    Is there isolation? Yes. Perhaps that is because there is no standard “disability” that the public can wrap it’s mind around? Autism exists on a spectrum much like asthma, however society identifies with the Rainman portion of the spectrum. How differently affected are folks with mental illness? Additionally, we are coming out of a societal segregation approach to disability. 40 years ago, society would have preferred my daughter to be institutionalized. Now that we have inclusion as a model, how many people my age went to school with someone with a disability? What pattern of behavior do we model for our kids in embracing disability, accomodation, mental illness or medication? We don’t… Unless you have a child with a disability, our generation doesn’t have much of a frame of reference for dealing with it, either in our children or ourselves.

    I will say that if I hadn’t left the corporate world to work for a disability agency, I wouldn’t have had nearly the tools I do have to help my daughter. Ironically, I wouldn’t have nearly the accomodation that I do have for my asthma either. It’s just a shame that the vibes I get in my daily work life (acceptance, encouragement, knowledge and empowement) aren’t the vibe in the rest of society. As much as I don’t care why my daughter and I have a disability, I’m incredibly committed to providing current knowledge, information and attitudes to everyone around me. What they do with that information is up to them.

    Okay, I’m climbing off my soap box.

  7. Asthma Mom says:

    Wow…..this is some thought-provoking stuff you all have left here, and in the comments section, no less! Thanks so much for sharing your impressions on life w/chronic illness, acceptance, lifestyle, medication, and raising children who don’t fit the molds.

    I have more to say tomorrow, but only after I reread your comments in more detail tonight.

    Thanks again, so very much.

  8. freadom says:

    Another cool post. I love a great philosophical discussion, and you definitely get us thinking. I was very thrilled to see the link to my site, especially on Fox News. Cool.

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