I'm intrigued. I'm a licensed teacher. I've worked with people with cognitive disabilities. I've known the heartache that comes with hearing that there's something wrong with your child.
So, I did what any rational person would do: I clicked on the link and began reading. She talks about the word "retarded" and it's (unfortunate) common use. She then talks about her daughter, Maura, who is, by definition, retarded. And I mean "retarded" in the actual definition of the word, not the common-use definition of "stupid."
It got me thinking, which is something that happens quite often when Little Man is napping.
I've used the word "retarded" more times than I care to admit. Having worked in education and with people with cognitive disabilities, I do know the difference between the actual definition of "retarded" and the common-use definition meaning "stupid." I knew the difference anyway, regardless of my background in education. That's not the point. The point is, I started thinking about my use of the word and how that use is going to be passed down to Little Man. I don't want him to equate "retarded" with "stupid" because they do not mean the same thing, and never have meant the same thing. He is going to know the difference.
Usually, people will say something like, "Oh, I'm such a retard" or "I'm so retarded." Most often, they mean that they're stupid or doing something stupid or, as I like to call it, having a stupid. I try to use it in a context to mean that I'm slow or I'm just not getting something as fast as "normal." In other words, I try to use the word in it's proper form and definition...but because people have been equating "retarded" with "stupid," most people think that I'm saying something along the lines of, "Oh, I'm so stupid" when, in fact, that's not what I meant at all.
It's somewhat frustrating.
But now we get into something a little different......Little Man. I don't know that I've ever really told the story in full. Maybe I have. I'm too lazy to go look. So, onward...
When he was born on November 9, 2010, he came out as pretty and as perfect as he could be. Full head of hair, pretty little lips, big blue eyes...and the boy could flirt like no one's business (as he's gotten older, he's just honing the skill - he's always been good at it).
Then we got that phone call. It was Wednesday, November 17, 2010, round about 4pm. I was planning to take Little Man to Wednesday night knitting to meet all the ladies (and Al, our only man). The phone call was from the doctor's office. You need to come in right now because something came back on Little Man's newborn screening. Can't this wait until tomorrow? No, absolutely not. He's going to the hospital tonight. Talk about a way to throw new parents into a HUGE panic. Like we didn't have enough going on at that point. My grandmother had passed away not even a week prior to that (the day Little Man was born), we were dealing with the estate and the lawyers, we were new parents...and then you call us to tell us that there might be something wrong with our perfect Little Man. Seriously. WTF?!
We got to the doctor's office, not really prepared for anything, including a hospital stay. The pediatrician handed us a huge stack of paperwork and said, "I'm not sure what this is; this is what the University sent me and I've taken out all the giberish." Seriously? The pile of paperwork was almost an inch thick...and there were things taken out of it?! Husband was in charge of calling the doctor at the Waisman Center at the University of Wisconsin - Madison. Husband was in charge of making the appointment to see them the next day. I was in charge of Little Man. Husband got appointments set up for the following afternoon with a biogeneticist and a metabolic dietician. In the meantime, we were sent to Mercy Hospital in Janesville for overnight and a buttload of tests.
In the 15 hours we were at the hospital, Little Man had an EKG, echo-cardiogram on his heart, liver, and basically all his innards, several blood tests, and I was forced to feed him every 2 hours, whether he wanted to eat or not (usually, he was okay with eating at least an ounce). We read through the paperwork from the University doctors and did some of our own research on the internet. I did a fair amount of crying. I didn't want anything to be wrong with him. He was my baby.
Little Man had been flagged for a disorder acronymed VLCADD. It stands for Very Long Chain Acyl CoA Dehydrogenase Deficiency Disorder. It's a metabolic disorder, specifically a fatty acid oxidization disorder. When we met with the biogeneticist at the Waisman Center, Dr. Greg Rice (PhD, MD), he explained that just because Little Man had been flagged for this disorder, it did not mean that he absolutely had it. We talked about the genetics of the disorder. It's basic genetics. He has two parents and he gets a gene from each of us (in a perfect world - sometimes, you get two genes from one parent and none from the other but that's a different story). In order for him to get flagged for the disorder, he had to have gotten one "bad" gene from one of us. If it turned out that he had the disorder, he would have gotten a "bad" gene from both of us...which means that both of us are, at least, carriers of the disorder. So, he had at least one "bad" gene.
We talked about how the history of the disorder. VLCADD is a fairly recent discovery. It was discovered while they were doing work on the human genome project. So, we're talking within the last decade that it was discovered and probably only within the last five years that they've figured out how to test for it. We talked about what happens with the disorder. In the case of VLCADD, long-chain fatty acids cannot be processed. They can build up in the system, become toxic, and kill you. What also sets it off are things like fasting (for surgery, religious reasons, or just being sick). When you fast, your body uses up all the energy stores and then it starts going after body fat. Well, since the body cannot process these fats, they just sit there, building up, until it reaches toxic levels.
Then Dr. Rice looked at all the tests we had run on Little Man. All the tests were normal. Everything looked fine, including his acyl-carnatine levels (which is one of the diagnostic blood tests). Sadly, just because the tests were normal did not put him in the clear. He could still have the disorder and be completely asymptomatic. At that point, we had been thrown a ton of information, been told that there might be something wrong (but all the tests were normal), and that we were going to have to do a DNA test on him to be sure. In the meantime, we were going to treat him like he had the disorder.
Well, what the hell did that mean?
It meant special formula that we get directly from the University. It meant feeding him within a certain timeframe (at first it was every 2-3 hours, then it got more and more time between as he got older). It meant making sure he was eating if he got sick and if he wasn't, we were to take him to the hospital, no fooling around (we were given an Emergency Room protocol that was to be followed). Because he was so young, we didn't have to worry about solid foods or exercise or any of that.
We met with the metabolic dietician, Sandy Van Calcar, MS RD. She gave us the formula and directions for how to use it. She and Dr. Rice both told us that he probably wouldn't like it so we were allowed to mix it with the regular formula since he was asymptomatic and probably didn't have the disorder.
The next few weeks were rough. Getting up every couple of hours to feed Little Man, praying to God that he didn't get sick, and waiting to hear back from Dr. Rice's office about doing the genetic test (DNA) to find out for sure if he had the disorder. Dr. Rice told us that because he was asymptomatic and his test results were perfect, that there was only something like a 12% chance that it would turn out that he had the disorder. We waited. One day in February, we got the call to come in for the DNA test. Poor kid had to have a huge gauge of skin taken out of his leg. His tests continued to be perfect and he continued to hate the new formula. We were told we could stop giving it to him for the time being because he really didn't like it and his tests were still normal.
A few weeks later, we got the phone call from Dr. Rice's office. The DNA results had come in and we needed to come in to see him.
The first words out of Dr. Rice's mouth were, "I need to eat my words. I told you that there was very little chance he'd have the disorder..." I kind of stopped listening at that point. My baby was sick. He had this awful, PITA genetic metabolic disorder and it was just going to ruin his life. He had VLCADD...but was completely asymptomatic.
We discussed what all this would mean. We talked about his "diet" (heart healthy), whether he'd be able to play sports if he wanted to, how often he'd have to see Dr. Rice & Sandy, how often he'd have to see the cardiologist, Dr. Srinivasen, what to do when he's sick, who to call when he's sick, and a bunch of other aspects of the disorder, including doing a DNA test on both Husband and I.
We had confirmation that he had the disorder.
Is my son "retarded?" No. Not by a long shot.
Is his life going to be different from the lives of other children? Not really. He'll learn to ride a bike, play baseball, climb trees, read, and all the other things kids do...maybe a little differently but he'll still learn it.
Are there some things we're going to have to do differently because of his disorder? Absolutely.
Does my son have a disability because of this disorder? This question trips me up. I have a child with special needs, that much is true and obvious...but does he have a disability, an honest-to-goodness disability? No.
I have a son. He has special needs. He's not retarded. He's not stupid. He's not any different from anyone else because, let's face it, everyone is unique...and if everyone is unique, then any differences he has from other kids are just as unique as he is and that's completely normal.
By the way, you need a photo...please notice that he is flirting, as usual.
|Yes, I wear a monkey hat. Monkey hats are cool.|