Taking care of business

 

There's a couple of things I've been considering following up on in terms of closure. More my closure than yours (as a reader) I guess, but posting it makes it real and I'm trying to be a little more real...

In asthma news, one of my goals this year was to talk with my doctor regarding a plan that would keep me off of prednisone for the foreseeable future. Since I usually succumb to bad air and pollution in the spring and fall it seems I just reverse the weight gain from one dose and then I start another. I did some research in the past week and sent my doctor an email to see what he thought. He agreed that I could try this but cautioned that I'll still likely end up on prednisone. The plan is that I will add one additional inhaled cortosteroid into the mix when I start to get sick. I don't know how well it will work as I really only have about 12-36 hours from the first lung alert until the inflammation is bad enough that I need to be on prednisone. If I wait 36-48 hours I generally win at least a month on steroids. So timing will be crucial but this is the first hope that I've had in over two years. I've never done anything in the first 24 hours that prevented a flare up and a trip down prednisone lane, but maybe this will be the magic bean. Gotta give it a shot!

In other news, I wanted to follow up on a comment Asthma Mom made on my blog last week. She wrote a very perceptive post last week regarding raising a child with a chronic disability. [Her daughter is also Asthma Girl!] Her question to her readers was: Why does parenting a child with a chronic illness make us feel so alone?

In answering, I revealed some information that I haven't been super clear about here. I have a daughter with a developmental disability. At one time she was considered pretty significantly affected. She is doing well now, but it has been a struggle to get spot-on evaluations, to request and receive appropriate services and to be a good advocate for her. My daughter was the primary reason that I took the job that I have in disability services. Although in the disability world, her outlook is as good as it gets, from a parental standpoint, there's every possibility that she will always live with us.

In order to better define myself and my beliefs, after much consideration, I'm posting my response to Asthma Mom for you to read. Don't feel you have to... it's perfectly okay to scroll on down to the picture naming contest and use your creativity to wow the masses! For those that want to see the whole thing... here you go:

"I have to chime on this as well. Although I wrestle with my own disability, my larger battle has been dealing with my 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 disabilities. Along the way, I faced resistance from my husband, my parents my in laws… you name it. By the time we allowed her to enter Kindergarten (we held her back as long as we legally 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 in social situations and her amazing memory (entire Disney movies of dialog) we 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 that adores animals, anime' 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 without trying to solve the mystery of why. 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 questioning 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 semblance of submission.]

For me, dealing with my in-laws, the teachers, the less than stellar 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 given her level of ability at school age. 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 or family member 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 experience 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."