Children and Chronic Illness: Your Response

The usual Friday Links will appear later this afternoon or maybe we’ll do another Saturday Edition tomorrow.

Why?

Because Wednesday’s post about raising a child with a chronic illness generated a whole slew of thoughtful, perceptive comments, and I’m still chewing over some of the more penetrating issues. Your input makes me think, and I so value reading your two cents as much as I enjoy writing my own.

Since I don’t want such marvelous comments to go unread, today’s post is all about your words. I’ll save mine for another post.

I asked

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

You said:

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.
-Emily

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.
-Kelly

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.
-Anonymous

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”.
-Food Allergy Mom

Although I wrestle with my own disability, 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, accommodation, 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 accommodation 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 empowerment) 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.
Asthmagirl (the very perceptive blogger, not my kid)

6 responses to “Children and Chronic Illness: Your Response”

  1. Asthmagirl says:

    You got some really great comments on that post (discounting mine which was somewhat rambling). Parents don’t have wishy washy feelings about having kids with any disability. It is such a shame that society doesn’t embrace the concept of disability and accomodation early on. Although in a way, agencies that serve children with disabilites recieve fairly strong community support. However, once the person with a disability becomes an adult, the perception is that there are programs for that. Ironic in that the person is an adult much longer than they are a child! And yes, I speak mostly of people with developmental disabilities although you could certainly apply my statements across the board.

    Wow, this soapbox is getting comfortable!

    Thanks for visiting each day! I always look forward to your comments!

  2. Steve says:

    Hi Amy…Nice new clean layout! I see you went to a 3 column style–I like that.

Leave a Reply