Wednesday, September 15, 2010

The Cadillac of Disabilities - Rant #3

When you are "dealing" each and every day with something, you don't really want to hear someone tell you that your child has the "Cadillac of Disabilities". I mean really, Really, REALLY don't want to hear this.........

The truth is, Elise probably has an "easy" disability. We know what she has. There is a clear, definitive way of testing for it. It is very simple nowadays to test for it....and no chance of missing it. While there is a wide range of time-tables and medical issues that may occur, there are many aspects that are defined by the chromosomal framework.

The person that told me this has not one, but two children with a profound degenerative disability...that they were born with, but that did not manifest until they were older children. They were "normal" while they were young, but they are now losing verbal control, are in wheelchairs, and are no longer independent at all. They are in their late teens, the time in life you should be letting your kids try their wings in the wide world, not working backwards...

My girlfriend, that I tease is my "borrowed" friend, has 4 kids as well, and every time she turns around one of them has some crazy new issue that is virtually indefinable. None of the issues are able to be linked together to "make" a label. Allergies that cause myriad medical effects, sensory issues that are never "enough" to earn educational intervention, and now her oldest is "day-dreaming" in class. Her gut told her that it was not right. She was just told that this child is not day-dreaming, she is having mini-seizures. WHAT? There will be further tests, but they are flying blind...they have no starting point. There is no One Test that will be able to give her parents an answer or a framework of what to expect.

With Down Syndrome, at least we know to screen for certain things. We know that many people with Down Syndrome in previous generations did not "die from the Downs" nor did they start with such low IQ's. That, in fact, children died from heart conditions that now can be surgically corrected. 50 years ago, the medical community told parents not to let them run or get too excited because their heart "could not take it". Thyroid left unchecked caused not only weight issues, but would actually cause mental retardation that would drop their IQ significantly over years... Vision, hearing, and blood work screenings prevent multitudes of secondary diagnoses. We learn more and more as the years progress. The chemo protocol that was followed for Elise had been used on less than 20 children when we decided on it. They had learned the while the fragile construction of cells made them more susceptible to cancer, the fragility of the cells also allowed less aggressive chemo to have better results with fewer side effects. (Not that this made it all sweetness and light!) The more aggressive chemo actually caused their bodies more damage than it helped...crazy, huh?

The monkey wrenches that come up now are the secondary diagoses of Autism, ADHD, Hypothyroidism, Leukemia, Cardiac malformations... The primary diagnosis of Down Syndrome is becoming fairly straightforward...not easy, but more understandable in general.

I am thankful that we have the answers we do. I am thankful that we are not doing this in previous generations...I am thankful that there are more opportunities and hope!

I am thankful that I get to watch my girl run and play and not worry that her body will turn on her...she gets to relish life...and I get to sit back and ride in her Cadillac! :)


  1. always the opptimist. I can see how having so much knowledge available would be comforting, verses riding through a rollercoaster of unknowns and not having resources to tell you what you need to know.
    Who did you borrow that friend from?

  2. Ha! I'll never tell! I might have to giver her back! And that's not gonna happen! :D