Monday, September 10, 2012

Trying to Keep Up

1. Living as a parent with autistic children is tough going. When I finally made it into the sanctuary this morning (I gave up trying to convince Alex to go to his class and eventually just carried him in, under severe protest), this is the scripture I was reminded of, from Matthew 15:21-28 (MSG):

From there Jesus took a trip to Tyre and Sidon. They had hardly arrived when a Canaanite woman came down from the hills and pleaded, “Mercy, Master, Son of David! My daughter is cruelly afflicted by an evil spirit.”
Jesus ignored her. The disciples came and complained, “Now she’s bothering us. Would you please take care of her? She’s driving us crazy.”
Jesus refused, telling them, “I’ve got my hands full dealing with the lost sheep of Israel.”
Then the woman came back to Jesus, went to her knees, and begged. “Master, help me.”
He said, “It’s not right to take bread out of children’s mouths and throw it to dogs.”
She was quick: “You’re right, Master, but beggar dogs do get scraps from the master’s table.”
Jesus gave in. “Oh, woman, your faith is something else. What you want is what you get!” Right then her daughter became well.

I sat in church in tears, praying for Alex in his class, praying for mercy for him. For peace. For blessings for his teacher and the teenager charged with helping keep him on task and not disruptive to the rest of the class.  He is capable of participating in Sunday school, but it is sometimes easier to let him sit in a corner and draw his pictures. He is capable of memorizing the weekly Scripture verse, but I need to print it out and post it in him room each week. But he really has to want to cooperate and I guess we haven't been persuasive enough. Time to turn Sunday School into an opportunity for "earning." Ugh. 

I don't feel like a mother, I feel like a poorly-paid, woefully under-trained therapist. It's like every interaction with my children has been turned into either therapy or not-therapy. Therapeutic moments are ones where I'm moving the child towards a distinct goal (something grand like potty training or something minor like putting their clean clothes away in the correct drawers). Not-therapy would be like the times I allow Alex to play Angry Birds uninterrupted. There are combination or compromise times, like letting him play Angry Birds so he'll eat his dinner (Alex cannot sit and eat; he must do something and eat, whether it be draw, read, listen to a story, watch a movie, or play a video game), because it's more important for him to eat than just about anything else. (My summer vacation assignment from Alex's doctor was to fatten him up and to tell the truth, I feel like a complete failure. He will get weighed in during our visit to the doctor on the 19th and we'll see how well I did.) 

So many of the "fun" things we do are just well-disguised therapy trips. Vacation to San Diego = chance to test their abilities to cope with new environments that often have rigid rules (like going through Security at the airport). Join the cousins as guests at their swim club = see if Alex can follow new rules in a new place without getting into trouble. I'm just not having any fun with my kids these days, what with Alex on Month #4 of being Mr. Grumpy Pants and Miranda regressing on potty training. 

Okay, end rant. I wrote that last night and I don't have time to finish it or fix it or soften it this morning because I have to go to the doctor's office this morning because I have fluid in my ear. So I'll just finish with pictures. Hopefully, I will be able to pick up these thoughts again later this week.

2. Alex & Miranda on Alex's first day of school, Thursday.

3. Miranda on her first day of school, Friday (picture by Daddy, even though the bus comes from the other direction.

4. Alex's first day of third grade.

5. Miranda's first day of Kindergarten. The sign showed up the afternoon before; I love that PTO!

6. Not much stitching this week because I was too busy watching the US Open (tennis), for some strange reason. But I was able to finish my current section:

7. And here's Jen!

1 comment:

jen said...

I have an autistic three year old so I totally resonate with #1. I was talking to someone at the church where I do Morning Prayer on weekday mornings when my son isn't in school and she told me that autism used to be referred to as "angel disease" because the kids looked like angels. Mine looks angelic but there are SOOOOO many things that are uphill battles. He said "bye" to his preschool teacher on Friday and got a response that for a typically developing kid would be reserved for doing a cartwheel.