Children and Chronic Illness: Your Response
The usual Friday Links will appear later this afternoon or maybe we’ll do another Saturday Edition tomorrow.
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.
Why does parenting a child with a chronic illness make us feel so alone?
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. Itâs sad, but Iâm 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 theyâre 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 donât achieve some skills like little Johnny Smith or Susie Q. Why they canât stray from their strict daily schedule. Why little Johnny Smith can go to the movies in the middle of the week and we donât. Itâs hard, and it hurts more and more as they grow up, because theyâre actually realizing that theyâre different no matter what I do to help them âfit inâ the mold that society has created as the perfect, all around kid.
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 donât know the why, much less working through things one day at a time.
Concerning the isolation that every parent with a chronically ill child feels, the stigma off mental illness can make this much worse. It isnât just that people donât understand what youâre going through, they avoid you altogether.
I totally understand the âlonelinessâ. My daughter has a severe food allergy. It took a while before anyone in the family âgot itâ. 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 isnât 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 doesnât 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 donât totally fit into âperfect, normal kid moldâ.
-Food Allergy Mom
Although I wrestle with my own disability, my larger battle has been dealing with my youngest daughterâs 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 speechâ¦ 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 lawsâ¦ 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 workersâ¦ 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 Childrenâs 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 districtâ¦ 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 canât understand her. That doesnât mean they donât love her, they just donât 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 âdisabilityâ that the public can wrap itâs 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 donâtâ¦ Unless you have a child with a disability, our generation doesnât have much of a frame of reference for dealing with it, either in our children or ourselves.
I will say that if I hadnât left the corporate world to work for a disability agency, I wouldnât have had nearly the tools I do have to help my daughter. Ironically, I wouldnât have nearly the accommodation that I do have for my asthma either. Itâs just a shame that the vibes I get in my daily work life (acceptance, encouragement, knowledge and empowerment) arenât the vibe in the rest of society. As much as I donât care why my daughter and I have a disability, Iâm 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)