Her innocence and joy?

The beauty of Thanksgiving and the people I love

I hope that you all had a wonderful Thanksgiving with family and/or friends. I personally love sharing the food preparation and eating, games and puzzles, laughter and stories with those that I love most. It's a time to remember our blessings, our forefathers and how fortunate we are to live in America. Aren't we SO lucky?

In general, I find myself drawn to the good news. The FB posts and news of whiners (like the Patriots quarterback Tom Brady hee hee) just turn me off. I often hide those kind of negative Nancy's from my FB feed. Call me unsympathetic or naive to only want the happy and positive in my life, but we have enough stress around here that I like to protect us from more so this is the route that I choose. We never watch the local news for this reason. All they want to share is the shooting on this side of town, the rape on that side of town and the burglary over there. It's all high drama and I hate drama.

Unless there is illness or an accident or something out of your control...then I'm a huge sap and drawn to your stories. If I had extra $, I'd be broke on all those Go Fund Me pages that I click on like an addict to see the story and the pictures.

I'm not sure, but my guess is that you are drawn to Molly and her stories because she is so pure and innocent? You too like hearing about her little (and big) successes. I can write about other areas of our lives but none get the numerous "likes" and comments as the Molly posts do. I am curious about this and would love your input. What is it about her and her stories that draw you in? What questions do you have about her? I would say "for her" but she isn't very capable YET of answering those direct questions. I pray that she will one day. My hope through this blog is to educate about autism and ultimately provide more empathy for those like Molly out in the world.

Yesterday we had a long 3 hour intake with the local Resource Exchange (TRE) that will help supplement services for Molly (most especially once she turns 21 and ages out of the school/transition system). This was the time that instead of focusing on her strengths, we had to truly look at her deficits so that she will get the appropriate funding to follow her through the next stages of life. It was through answering the 100's of questions that we really got to see how much WE do FOR her to enable her to have a very happy life.

We were supposed to picture each scenario as Molly walking into that situation alone and how much support would she need from another to have success with bathing, cooking, personal safety, job (applying for, interviewing, knowing what to do at the job, self advocacy while at the job, doing the job, staying focused at the job, getting to the job, calling for transportation, knowing when it will arrive) volunteering, etc, etc The laborious part was having to answer either :

0= no support needed (Think we only had a few of those)

1=monitoring (reminders) "What happens after you brush your hair?" (She had a few of those)

2= verbal direction/gestural prompting(coaching) "You need to put on your coat and watch for your bus".

3= partial physical assistance (help through doing). We make almost all of her meals, wash her clothes, order for her at restaurants, drive her places, make doctors appts and get her there etc. She lands in this category for working hard at Special Olympics swimming: we get here there but she does the work herself. She puts her clothes in the laundry basket and puts away clothes once they are washed. She sets out the items for Ramen noodles but doesn't turn on the gas stove, etc.

4= full physical assistance (doing for) (Most of the answers were in this category) With Molly's inability (yet) to speak for herself either with her mouth or her augmentative device, she is limited in this world.

These sessions are also reminders to both Brooke and me just how much we enable Molly. There ARE things that she could do that we just still do automatically for her instead of setting up situations where she needs to struggle a little to succeed. We still cut her food for her!!! When asked this we kind of grimaced. Why do we still do that automatically? Geez! I bet she could do it....if she'd ever eat a steak or chicken or protein to practice with :)

Ok but we are not done with that monotonous questionnaire. No. After answering 0-4 on each question, we then had to say how frequently each support was needed. Less than monthly, at least once a month, at least once a week, at least once a day, or hourly? THEN we had to break it down even further and say what the daily support time needed was: none, less than 30 minutes, 30 minutes to less than 2 hours, 2 hours to less than 4 hours, 4 hours or more?

The benefit of all that is that now there is a pretty clear picture of what Molly can do on her own and how much support she needs in each environment. We were promised that we don't have to do that evaluation annually :) Those deficits are hard to face as Molly is so happy in her life. But if Brooke and I are not here to support her, how do we get those support systems around her before we go? That is what drives me now.

Working hard at speech therapy

She is thankful for "mom"..... and childhood friend Alana

Waiting at the doctors office