autism is a journey: Routine

Sunday, January 13, 2008

Routine

Back in school (great sigh of relief passes)...

While I think that the variation in predictability is good for Jackson, I also really notice without structure and routine, he has a tendency to withdraw into his own world. The honest truth is that the holidays were so busy, hectic and stressful for me that I didn't make the effort to keep him engaged. Now that he's back in school he's more focused, verbal and settled.

I have to wonder, what 'his world' is like? What is it there that comforts him, draws him away from 'us'. Is his mind bouncing from place to place; or is he content to float within his own reality? Is he capable of actually thinking about his actions or do his needs propel him forward? I know he understands consequences and limits, but I have to wonder how he processes time, thought...

My insomniac brain has detoured to the curious, how far would we go to know his thoughts, hear his words beyond what he has now; what if the elusive "cure" is found? would his life be better? would he be grateful to be released from the prison of autism, or would he long for the isolation his disability brings?

My prayer for patience is answered daily when the Lord gives me opportunities to grow this attribute through the daily trials of living with autism.

2 comments:

Marlowe said...: "My prayer for patience is answered daily when the Lord gives me opportunities to grow this attribute through the daily trials of living with autism."
And patient you are my dear friend...I admire your courage and faith Heather. Jackson is awesome, and he couldn't have gotten this far without you.
Love,
Marlowe; January 13, 2008 at 6:43 AM
tylerbritney said...: (((HEATHER))) I hope things have gotten better now that school is back in session. I think all of our kids were a little out of sorts. You are a great mom and Jackson is so lucky to have you!!!; January 16, 2008 at 7:02 AM

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from "Metaphor-the puzzle piece symbol"

Ever had one of those "ah-ha" moments? I'm driving down the road today, pondering Jackson's recent successes--boyscout camp and football camp. It occurred to me that each experience gave me back a piece of Jackson. [I'm not doing a very good job explaining this...] When we learned about Jackson's diagnosis, so many dreams were snuffed out. We no longer thought about our son becoming an athlete, a scholar, or even a friend. We thought in much smaller terms:"how many words does he have?""did he learn a new sign""is he reaching out to us?""that's playing pretend, isn't it?"Our perspective as parents permanently changed. It's like we had this complete picture of our child and autism fractured it--into a 1,000 piece jigsaw puzzle.Each day little by little, we get pieces of the puzzle back. It'll never be complete, never the same as we expected, but there will be parts that will come together.Like when he participated in the school music program, enjoyed boyscout camp, rode the roller coaster and attended football camp. Bit by bit, we get pieces of what we expected back.Of course, the flip side of this is all the joys we gain from Jackson that we never expected in spite of the autism, but that's another post my friends....