Archive for the 'advocacy' Category

What is “normal”?

I don’t often post about Abby…but something happened yesterday that got me thinking a lot about what is normal, and what isn’t.

A topic about ADD/ADHD came up on my parenting board.  One of the mom’s is concerned about her daughter, and another mom posted an article of symptoms of ADD and ADHD in girls.  A THIRD mom posted that “she could fit herself into any one of those categories at some point in time or another.”  So I got to thinking about that.

The third mom talked about having 3 or more sewing projects going at one time…and they would get finished when they got finished.  I guess I think that’s pretty normal.  Now, I’ll use ME as an example.  I often will have several CHORES going…because I get distracted while I’m cleaning my half bath (you know…a sink and a toilet…not to hard to clean in one shot) and start doing something else, when I get distracted and start something else, and before you know it, my entire house is partially clean, but not one single thing is FULLY cleaned.  THAT doesn’t feel normal to me.  Or a child who is so distracted by just about everything, that they can’t finish one worksheet…all day long, not just occasionally, that’s when it becomes not “normal.”

She talked about running off and forgetting her purse…or as a child, forgetting her boots when she left school.  THAT to me is normal.  My friend’s story about her daughter coming home from school with only one shoe. (and no boots, there were no boots involved in the story.)  THAT isn’t so normal.

In the space of writing this post…I was just gone for a least 20 minutes.  I stopped to do something, and completely forgot that I was writing.  Normal for something like that to happen occasionally.  I’m embarrassed to admit how many times something like that happens to me.  Twenty minutes…I don’t think it’s ever been that FAST before.

Racing thoughts?  Sure, everyone has times when they can’t shut their brain off.  However, my brain, literally, never shuts off.  It’s like being in a crowded lecture hall before class starts.  I have a constant buzz going through my head.  Thoughts then “cross my mind” and I have to expend time and energy to decide whether it’s something I need to focus on.  Was I remembering that I forgot to turn off the oven, or was I remembering and reliving the embarrassing conversation I had with someone 7 years ago.  Yep, I do that…I don’t seem to ever really “forget” anything, AND, I get anxious and sick to my stomach thinking about them, as if they happened 10 minutes ago.

I feel like I have to justify my decision (for lack of a better word) to put Abby on Adderall.  For some reason, ADD and ADHD have been classified as character flaws, rather than a medical diagnosis.  Not only that, it’s considered a character flaw for the PARENT as well as the child…or maybe rather than the child.  As if we parents don’t beat ourselves up enough about the genetic Molotov Cocktail we’ve passed on to our children.  If it turns out that our children need medication to function normally in school and at home, it’s because WE don’t want to parent them.  It’s because WE’RE too lazy to take the time to TEACH our children how to function.

I didn’t realize we could TEACH the brain to use neurotransmitters correctly.  It’s like saying it’s time to teach the Pancreas to use insulin correctly.  Sorry, Sally…your pancreas doesn’t work correctly, but we’re going brow beat and bully it into submission.  You won’t need insulin…you just need to teach it to work.  (it’s been pointed out to me that apparently, my comparison of psychiatric meds to insulin isn’t a valid one, because no one is going to DIE because they didn’t take ADHD medication…but, oh well…I’m going to continue to use it)  Or, perhaps I can TEACH Mariella’s stomach to move food at the proper rate…then she won’t need medication, or teach her lungs to move air efficiently.  No one seems to question my “decision” to medicate her PHYSICAL ailments, and yet people think it’s OK to not only question my “decision” to treat Abby’s ADHD (and her depression, but that’s neither here, nor there) but to demean me, question my desire to parent, and basically make me feel like crap. (because I don’t do that to myself, or anything)

So…what IS normal?  Every spring, I have a certain conversation with my girls.  We have several tulips (I think) that grow in a most inopportune spot of our lawn.  Abby gets mad because we mow them down…telling me that they are flowers.  I tell her that any flower that grows where you don’t want it is a weed.  It’s not that it’s not a pretty flower…but if it’s where you don’t want it…it either needs to be moved to where you want it, or it gets mowed over.

So, while most people have symptoms of ADD and ADHD at some points in their lives…I’d say that’s pretty normal…but when the symptoms begin to impair function, then it becomes not normal.  Someone might be *clinically* quite severely affected by ADD or ADHD…but if it doesn’t impair their life or ability to function…then it’s not a “disability.”  It’s normal FOR THEM.  I’d be quite happy for them, that they were able to learn coping techniques, etc.  Not everyone can do that, and it’s not fair to say that they should have to.

Anyway…I’m afraid I’ve gotten rambley and probably off topic.  I’ve been distracted and torn away and come back several times.  I’m not sure it even makes sense.  I had to get it off my chest.

Wear Gray For Asthma Awareness

That’s something you don’t see. We’ve got “Go Red For Women” We’ve got “Wear Blue for Autism” We’ve got “Wear Green for Organ Donation” The ever popular “Wear Pink for Breast Cancer” I’ve never ever seen…”Wear gray for Asthma”

Of course…though I’m wearing my blue shirt today…I don’t believe that it’s raising awareness about anything. If I were wearing a shirt that SAID something about Autism…THEN I think I’d be raising awareness, but just a blue shirt…my husband is wearing a blue shirt right now, and I know it has nothing to do with Autism awareness. Unfortunately, we’re all aware of Autism. We’re aware of Breast Cancer. Asthma is one of the forgotten diseases. After all, it’s “only asthma” I guess it doesn’t matter that 11 Americans die every day from asthma and asthma related causes. How many people a day need to die for it to stop being “just” asthma? How many children, mothers, fathers, sisters, brothers need to die before people understand that it’s not just a disease where you need a quick puffer, and you’ll be fine.

I don’t think I’m asking too much. Maybe we need to pick a day where we all wear gray. We can make a FaceBook event…that seemed to get a big response. Maybe May 4th…May is Asthma Awareness month…May 4th is World Asthma Day…maybe we should get something together.

Just a rant…

This was a post this week on one of my favorite blogs to follow. Amy had written earlier that it would be nice if Michelle Obama took Childhood Asthma as her issue. After all, she has a child who suffers from asthma, and it’s somewhat of an “invisible” disease. Unless one has lived the all-night coughing fests, the trips to the ER when your child can’t breathe, or any of the other “things” that parents of children with asthma have to deal with…it’s too easy to say, “it’s just asthma.”

First Lady Obama has chosen childhood obesity as her cause. Yes, it’s alarming how many children in the US are obese. It’s MORE than alarming how many children are being diagnosed with Type 2 Diabetes. However, I have a very, very hard time feeling sorry for parents with obese children. The reason? With the exception of a very small population of obese children…the parents DID this to their children.

Parents who frequent a different drive through every evening for dinner. Parents who ply their children with crap all day. Parents who believe that food is love. Parents who believe that it’s appropriate to feed a 5 year old child an entire box of mac and cheese, or get mad at the nanny for not feeding a 3 year old a THIRD grilled cheese sandwich. These are also the parents who look at the doctor and say, “I don’t understand WHY my child is overweight.”

Parents of asthmatics (or any other chronic childhood disease) didn’t make the choice to have a child with a chronic disease. It’s not like we sat there one day and said…”hmmm, I think I’ll decide to have a child with asthma.” Parents with obese children make a choice every day. A choice to feed their children a healthy diet, or to feed them crap. Or even just to feed them enough of a healthy diet, or too much of one. There is such thing as too much of a good thing. Even if you’re feeding your kid whole grains and low sugar…if they are eating too much of it, it will still turn to fat.

On NPR it was stated…”Mrs. Obama attributes her sensitivity about childhood obesity to her own days as a working mom (married to a busy, political-type, rising-star of a husband). Before moving to the White House, she had little time to prepare healthy meals for young daughters Sasha and Malia.” I did work full time when A was small. In fact I worked full time until she was 3 years old. Sure, she came to work with me, but I was still outside the home 45 hours a week. I still managed to feed A healthy meals. I prepared things ahead of time, I used the crock pot and the pressure cooker. I’m not sure why it is so hard for some parent to make a healthy meal. Perhaps it’s because it’s so much easier to make excuses.

Perhaps I’m more sensitive than most. My child takes high doses of adult strength medications to give her what little control she has. These are the medications that have the warnings on the TV commercials about one of the side effects of the medications being death. I would love to have more research into the causes of asthma. On why some people respond so wonderfully to medications, and why some people don’t respond well, or at all. I’d love to have more awareness out there. Too many people think that asthma is no big deal. Sure, people with asthma might have to take the blue puffer, or the yellow and orange one…but…they wheeze a little, they might cough…they stick the puffer in their mouth and they’re fine. My daughter ISN’T fine. I don’t count the good times in terms of seasons or months. I get excited if she goes a week without needing a rescue overnight. I have yet to go a full week without her needing rescue during the day. The twice a week “benchmark” of control…I laugh at that. (BUT…it’s just asthma…people don’t DIE of asthma anymore…do they? YES, someone asked me that question…they were a bit shocked when I looked it up and told them that 11 people die every DAY from asthma. That 300 CHILDREN die each year from asthma.)

Michelle Obama had a chance to bring the issues of those of us parenting children who have asthma right to the forefront. She had a chance to perhaps make a difference in the lives of the approximately 7 million children in the US with asthma (and their parents.) I really feel like she dropped the ball on this one. She had the chance to bring awareness, and with awareness comes research dollars and with research dollars comes research, and better medication and treatments.

AND, on a total side note…it occurred to me today that most people’s understanding of asthma comes from the drug companies commercials. It’s been quite funny watching the Olympics with M. Normally, she watches children’s programming, which is generally medication commercial free. So, she’s been noticing the Symbicort commercials, and every SINGLE time one comes on, she says…”Hey..THAT’S MY PUFFER” I also have to be careful of my older daughter watching the Advair commercials, because she has been prescribed Advair for her sick plan…and they use the “asthma related death” phrase several times in that commercial, and A doesn’t usually miss stuff like that.