things change, but yet they stay the same.

Dakota August 2009, age 9 @ Fort Mountain State Park, GA

It's been quite a week (insert long sigh).

I don't really know how to begin this post, and I've been thinking about it for a few days, but for starters, I want to say that the reason I am "coming out" with this recent news is in the hopes that maybe now my blog will become more than just a way to share my life with the rest of the world... but to find others with whom I can share the ups and downs of parenting a special needs child, provide support, insight, and gain the same... and of course - blogging is an outlet... and I reckon I will need to vent here every once in awhile...

I'll add that this is something that we've suspected for quite some time... and now has been confirmed for us. 

Dakota was officially identified on Friday after several evaluations (I don't want to say diagnosed, so there) as "having" Asperger Disorder AND high functioning autism. He is almost 11 years old. Some people think Asperger Disorder IS high functioning autism, and the "paths cross" in many ways, but there are two separate standardized tests that were issued (among many others - including a separate sensory motor evaluation and cognitive evaluation). On the GADS (Gilliam Asperger's Disorder Scale measuring probability , with a scale of 1-80, 80 being a "definite", Dakota scored a 113... that's 33 points ABOVE the marker for definitely having Asperger's Disorder. On the GARS (Gilliam Autism Rating Scale), with the same 1-80 scale, he scored a 74. So he "probably" is high functioning autism, but definitely Asperger, and DEFINITELY ADHD (separate evaluation - 65+ being significant, he was 75). 

Dakota at Grayton Beach, 5/07, age 6 (photos by Laura Dison)

We already knew about the probable ADHD but suspected more was "wrong" for many years. He was just, well, different. The list of "differences" is long... but his primary issues were that he was basically socially inept, unable to decipher social cues, extreme interest in one subject with little regard for anything else, "bull in a china shop", has poor fine motor skills (cannot really even cut his own food very well), sensitive to food textures and clothing textures and hypersensitive to smells, inability to process multi-step directions, and extreme impulsivity (diarrhea of the mouth, too.. no filter). Part of me was dealing with denial... and this is the thing, these kids appear normal or "neurotypical" from the outside, but only after some interaction with them do you realize that something is different. 

Dakota received a "pseudo-diagnosis" via his pediatrician of ADHD, and has been taking medication for about two or three years to deal with the extreme impulsivity and inattentiveness (when there is a lot of other sensory stimulation going on). In addition to this I had done a lot of research about the gluten free/casein free diet and even done a paper about it in "college" (University of Phoenix - blech) as it relates to children on the autism spectrum (now known as the PDD or Pervasive Developmental Disorder spectrum). That's a WHOLE 'NOTHER post for a whole 'nother day. The bottom line is taking him off gluten and casein (basically milk products) improved his behavior so remarkably, that he no longer required the Student Support Team at school. We have since relaxed the casein free part but may need to go back since this will most likely be one of the recommendations we receive. 

His issues were not totally resolved by diet and meds, and so we knew, there was more that just couldn't be touched by either, and we needed to know...  moreover, he needed to know as he matures... what aspects of his behavior could not be changed by diet or meds or discipline... and so he could understand both his limitations and strengths. His strengths are TREMENDOUS, but where his brain is weak it somewhat hinders those strengths from being as strong as they could be... it's like the brain masks or drags down the strong areas. There is SO much in terms of "results" that we received... specific to what age certain lobes of the brain actually are, some are really high, some are really really young. His left brain age averages to age 12 (he is almost 11), because some areas are really high but those weak areas drag him down, and his right brain is age 6. So in some ways, we are dealing with a six-year old. 

The black and white photo series here is Dakota at age 6... and one of my favorites taken by my cousin Laura Dison. It really captures his personality both then AND now.

So now, things change, but really they stay the same. Now we know for sure. What is key now is that we have to change our response in parenting Dakota according to those things that we cannot discipline him out of... or those things we've tried to guide him out of that we're basically wasting our breath on... he will need accommodations at school (though doing well academically, there are some things he needs accommodations on) and that process needs to be set in motion. The treatment program at Brain Balance in Peachtree City is where we want to send him, but that requires a LOT of money in addition to a lifestyle that will need to be built around his treatment and care (3x a week driving to Peachtree City, about 57 miles from here). How we get there, I have no idea. This is all so overwhelming, really. 

Your prayers for this next season are appreciated. The revelation that elevated consciousness requires elevated responsibility came timely... we can't turn back now. Dakota is worth it. 

Here's some more info on Asperger Disorder (also called Asperger Syndrome) if you're interested:

Summary of Asperger Characteristics

DSM–IV criteria for the diagnosis of Asperger disorder

Dakota now, age 10