Saturday, August 9, 2014

The Dawn Breaks

What's the expression? It's always darkest before the dawn? I can certainly relate to that saying. 

My posts have been dark as of late, full of worry tinged with despair, colored with a lot of frustration. I was honest with what was going on with Bo, in our home, and in my heart. It was a difficult time for all of us, much of it based on the reality of daily behavior we felt we couldn't control, but some of the difficulty was based on the fear that we would never learn to control it, to control him. 

Although Bo is our eighth child, in many ways we feel very much like first time parents. He has issues we've never before encountered, coupled with the fact that we are still, eighteen months in, getting to know this little boy whose first three and a half years of life are virtually a mystery to us. 

Like a first time parent, my instinct is to react to every negative behavior like this is how it's always going to be. When my current bag of parenting tricks fails to produce results, I'm overcome with despair that we don't know what we're doing. When, in reality, he just may need more time to learn consequences to behavior and we just may need more time to learn antecedents to it. 

Together, we're figuring it out. 

He did get an autism evaluation (although it was a terrible excuse for one, in my opinion) from an autism center. In retrospect, seeking an evaluation from a place with little/no experience in Down syndrome was a mistake and he did not receive a diagnosis of ASD. Rather, he was tagged with the cop-out diagnosis of "global delays." Awesome.  

Immediately following that dismal experience, we had the privilege of attending the National Down Syndrome Congress Convention here in Indianapolis. We took most of the workshops on the ASD tract. I can tell you that every video and description that was shared fit Bo like a glove. We came away absolutely assured that we are not crazy, that we are not alone, and that our son indeed has a co-existing diagnosis of Ds-ASD. 

And we can do this. 

Before we even had a chance to implement anything we'd learned, Bo was already making progress. While throwing, spitting, pinching, and biting are still in his repertoire, they are not constant or even anywhere near it, anymore. We are less likely to be dodging flying food during meal times, too. 

The biggest change I have noticed is on the playground. A few weeks ago, I took these pictures of him experiencing the playground in typical Bo fashion. I missed photographing the end of our time at the park when he was pouring mulch over a lady's foot and trying to remove her shoe. I also neglected to get a picture of him sampling the mulch for taste and texture. Ew. 
He could lay in the bubble for HOURS!

He rolls these over and over and OVER.
As soon as KJ came to join him, he scooted out of the way. Soon after, he turned away completely.

Last week, we went to the park and I didn't even have time to take pictures because I was too busy keeping up with he appropriately explored every aspect of it. He climbed the stairs and went down the tunnel slide at least a dozen times. He climbed through tunnels, climbed a ladder (with close supervision), and was aware of other children waiting behind him, once even letting one pass without cuing. When other kids were around, he didn't shut down, but continued playing. He retreated to the mulch only once, but was easily redirected to the sand box. (Where he still sampled it and I tried really hard not to think about it. Ew.)

It was a great day and a HUGE gain for our little guy! We are looking forward to seeing what he'll show us next. 


  1. Tara, Looks like we are both going through the same phase. None of his therapists acknowledge his ASD. They just classify my son as developmentally extremely delayed while I'm certain he knows more than what he expresses.

    V also has this obsessive throwing and pinching. And, a lot of hitting too :) Oh, I dread being woken up by a tight slap from him :)

    And, thank you so much for DS-ASD link. That's very helpful!