Monday, 9 July 2012


Things are settling down now after the power outage, etc.  During times like that it's hard to think about plans, next steps etc.  But there are some things on the horizon that I am working toward right now.  Time to refocus my efforts!

I got a call from Johns Hopkins last week related to the SEED study.  SEED is the largest study to date in the U.S. seeking to identify risk factors for autism.  It is funded by the CDC and is being conducted in multiple different locations...California, Colorado, Georgia, Maryland, North Carolina and Pennsylvania.  This study involves a bunch of historical information from both mom and dad, identification of possible genetic factors, problems during pregnancy, early childhood, etc.  It also seeks to identify other concurrent health conditions (ie, conditions that seem to occur with autism- think seizures, celiac disease, psychiatric disorders, ADD, etc).  SEED is unique in that it accepts, in fact seeks out children that have other physical and developmental disabilities in addition to autism.  Most studies about autism only look at children that have this disorder and this disorder only.  So a lot of the sharing would be with mom and dad- and mom and dad would give saliva and blood samples in order to determine if there is any genetic link involved.  John and I both feel strongly that we want to know this.  We have accepted that our family is complete, although this is not what we originally wanted.  Our boys need too much of our attention and knowing their needs, we could not in good conscience bring another child into our family and possibly deprive that child or deprive my boys of what they need.  And there is the huge unknown factor....genetics.  Would all of our children be on the spectrum?  The odds thus far are not in our favor, 2 for 2.  We both have siblings that are either still working on their families or have yet to start them.  We want to have as much knowledge about the roots of our boys' conditions as possible to share with our families as they plan their futures.  And we want to know for the sake of Jack and Nate and (god willing) their possible future families.  So that alone makes this study worth participating in.

Nate will have to endure the same developmental assessments that he has in the past, as well as a brief physical exam.  Nothing earth shattering.  There is no intervention associated with this study.  It is solely for informational purposes.  Autism is such a mystery to the medical community at this point....if there is any way that we can help the cause, we are going to do it.  And we may gain some valuable information for our family in the process. Win-win.  They are just now recruiting for the next leg of the study- there have been groups recruited and tested since 2009...we signed up for this study back in April.  

Nate has been challenging us a bit this past week.  Frankly, he is being a two year old to the fullest extent.  It is very frustrating with him because while he is being extremely obstinate, he is unable to really tell us what is making him mad or what he is refusing, or why.  So he screams.  For instance, ever since we all slept in the family room during the power outage, he is fighting the crib like nobody's business.  Not unusual at this age, but all the information we get from him is "no!" "go!", or occasionally "go down".  Is he afraid?  Is he mad?  Insomnia?  Worried about global warming?   Not sure.  Although my gut believes he is pissed- he liked the other arrangement much more.  But he has been screaming in his crib every evening and waking up at 2:30am for more of the same.  Last night it went on until 4:30.  Every time I start to feel guilty, or worried that he is really sad or afraid, I hear him make his trademark, angry, what we call "german" sound.  Dacccchhh!  I will have to get a good recording of it and post it because it is hilarious.  And very very purposeful; and defiant.  Luckily by tonight he was too flat out exhausted to fight.  We took the boys to Rolly Pollies this evening and ran them until they dropped.  Pray for us that he sleeps tonight.  Between him and Jack (who was also up twice last night- par for the course) we were really dragging this morning.  Nate is also fighting his diet more than he ever has before.  Refusing the food we give him at meals and then getting out of his seat and literally tackling Jack for what he has.  I think this is a good thing- he is more cognizant of the fact that Jack has something else and he is MAD.  He wants bunny graham crackers too!  And he is certainly communicating that.  

He is also Mr. Destructive.  Knocking everything down with wild abandon, then lying amidst the rubble and laughing like a little maniac.  See exhibits A and B.  Hey, if being "naughty" is a good sign, things are looking up!!!  


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