Research report

So, my last post resulted in some really good discussion between my wife and I.  One of the things I discovered is that we are educating ourselves differently regarding down syndrome.  I think it's a very interesting difference and one that should be taken into consideration when a couple is told their soon coming child is diagnosed with downs.

In two weeks my wife has amassed a huge amount of information downs through book acquisition and I've gotten much of my information from her as she reads and share what she finds.  Many of the books relate to the experience of other parents particularly mothers as they go through pregnancy and raising a child with downs.  They very relational, experiential, and relational -- excellent stuff.  they also usually contain good basic information about down syndrome and the effects of the 21st chromosome.

I haven't done a lot of reading yet.  I've spent my time searching academic databases finding original research on downs and children with developmental delays.  I want data, I want to read the research, I want to know what the medical and behavior scientists have discovered. 

Now between the two of us, I'm thinking we'll be able to come up with a good picture of down syndrome, some parenting expectations and experiences, and knowledge about interventions and practices.

As parents, I think its important to know how you learn and from where you like to get your information.  My wife is much more experiential and relational, while I tend to like to get information from research data (of course at times, it flips depending on the subject, so these are not mutually exclusive and not one better than the other), but if you don't know how you're going to learn about down syndrome as a couple then the process of learning may lead to some relational problems because one person may feel as if they are doing all the learning and it may appear as if the other person doesn't care. 

Both people, both parents need to function as a team when raising a child with challenges. 

I encourage the men to take an active part in the learning process.  Search for information in the way that best suits you and share it with your spouse.  Actively discuss with your spouse what she's discovering.  And above all -- don't leave all the work to her and expect her to just teach you.  Talk about a recipe for chaos and hurt.

So, with that all said, once in a while I'll share some of the research I discover as I'm digging in the academic literature.

Mitchell, D. & Hauser-Cram, P. (2009).  Early predictors of Behavior problems. Journal of Early Intervention, 32(1), 3-16.

The basic scope of this article was to determine what factors predict behavior problems at the age of 5 among children which developmental delays.  the researchers compared children with downs, typically developing children, and children with movement disorders at the ages of 3 and 5 to see what factors assessed at age three would be predictive of behavior problems at age five. 

They found that children with down syndrome had the lowest rate of overall acting out behavior or challenging behaviors and that children with autism had the highest rate overall.

their conclusion was that family climate had the greatest predictive value.  family climate is whether the family functions harmoniously or if it is chaotic and abusive; the more harmonious and nonabusive the family environment the less the prevalence of challenging behaviors at the age of five.

This research indicated two things: 1) ages 1-3 are extremely important in the determining of future behavior among children with challenges; 2) a harmonious family is necessary for adaptive coping and functioning.

One disturbing note in this research is that no where were fathers mentioned; they weren't interviewed, they weren't assessed; they're education levels weren't noted nor where their income levels.  I'm seeing this as a trend in the academic literature and I don't like it.

the impact of fathers on children with challenges appears to be a completely untapped area of research.

 

be kewl

D.

 

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