Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, July 12, 2011

A first!!

Since Axel has been home for 7 months now, we don't see quite as many "firsts". When we do, we can sure tell, but there are times when Dean and I look at each other and ask, "I wonder if he's ever done this before?" We can only guess.

It is evident to me that Axel got away with A LOT of naughtiness wherever he was. Clearly tears were a tool for avoiding anything that appeared difficult to him. And when he thinks the boss of the place is out of eyesight? That naughty laughter starts almost instantly. He doesn't realize we can hear what he's doing. LOL

So for the past several months Axel and I have been sitting down to the table each day for school time. As long as we're doing something that is easy for him, he's happy to comply. The second something is introduced which is even slightly challenging to him, the tears start to flow. Well, it's not really tears, it's SCREAMING/CRYING.

When this first started, I would give him a minute to compose himself, then we'd start up again. Then it became an instantaneous occurrence, so I would remove him from the table and off to the crying spot until he calmed down. You know, it is SO EASY to see what is really happening when you're not in the midst of things, or are an outside observer! LOL It took me a couple days to realize the crying jags were lasting longer and longer each time. In fact, I think it was the time he cried for a full hour. Only it was a rhythmic, no-tears-involved kind of cry. Mr. Smartie pants figured out that the longer he cried, the longer he'd get to stay away from that table.

There is also another dimension to the cry. I'm pretty sure some of it is reflex. Like it is a learned behavior and normal for him to cry for hours at a time and once he gets going he can't stop himself. He gets a look of desperation on his face, similar to a child who cries then does the breath-holding thing. He starts to desperately point at random objects all the while crying this rhythmic cry. The first few times it was very sad to watch. After that it just became annoying. Frustrating. Sometimes he would get a look of total fear in his eyes, which made me wonder what memories are locked inside him mind. Ending our lessons on a positive note was nearly impossible some days. Some days I felt like the meanest, most evil mother in the world. Some days I felt like I'd lost all compassion. Some days even I avoided our lessons!

This behavior was NOT going to fly in school. I wanted to tell him, "Listen kid, you're in for a reality check pretty soon if you think you can do this at school!"  I needed to teach him a way to turn this off. I hate to compare my kids to my dogs, but there is so much about kid training and dog training that is cross applicable. With dogs, when there is an undesired behavior, you need to only stop the thought process, then predict the behavior so you can guide them to a different response the next time. Do this enough times and you will erase the "tape" that has been replaying over and over again in their brain, replacing it with a more appropriate thought process. How could I do that with Axel and his crying that so interfered with what were sometimes very minor tasks?

One day back in April, Axel was working on a letter activity with me. He could recognize all of his letters by that point, both upper and lower case. We were matching them together, an activity that was easy for him. We'd only done 3 pairs when he intentionally start matching them incorrectly. This is called "attention seeking behavior", and he does it a LOT! He would look at me out of the corner of his eye, then put an incorrect match together, then sign "wrong", and get the guilty look. He would do it again, and again, and again if allowed. I wouldn't allow it, instead removing all of his choices so the ONLY match possible was correct. Ohhh I was playing dirty and he didn't like it. The crying started. Loud, frantic, fearful crying.

"Axel, jump up and down like mommy."

He instantly stopped crying and started jumping. Seriously, I've never seen anything like this! The ability to STOP like you'd never been crying in the first place. Like you sneeze, and then it's done kind of thing.

"YAY! Ok, back our letters."

This worked two times, and then he was on to me. He didn't WANT to stop crying, because the crying is what kept him from having to work. It's more than a power struggle though, because once the crying started he couldn't turn it off without having his brain engaged with a different activity. It's slightly more than just distracting him. Can you tell I'm having a hard time explaining this? LOL

I asked myself, "What have I done that is really very hard, maybe even painful, that I needed to distract myself to relax?" Well, giving birth of course! And what are we taught to do? BREATH! Deep, cleansing breaths. Later that day, when we were just hanging out having fun, I taught Axel how to take "big breaths", and blow it all out. I spent a couple of days practicing this with him here and there. I even modeled how to use this when crying. I cried a fake, frantic cry, then put my hand on my chest and took a deep breath with a big exhale, then back to what I was doing.

Finally it was time to sit down and do some work again, and within a couple of minutes the crying started, "Axel, take a deep breath." He put his hand to his chest, sucked in, exhaled, and the crying stopped. Within just a few days he was able to make himself "relax" and take a deep breath, and stop the crying on his own. It was great!

And then he had his surgery.

A few weeks later, when it was time to start our lessons again, it didn't take me long to discover that he'd lost many skills, including the ability to calm himself. Even the easy tasks were now a challenge.

I was so frustrated. All that work down the drain. We started over.

Then yesterday happened. Axel and I worked at the table on LOTS of different activities, and for the first time ever, he didn't cry. He didn't shed one single tear AND he did a couple very challenging activities!!!  Axel felt success. He did it. He made it through the lesson without crying. He did some things that, while they were within his ability, were very challenging, but he DID THEM. I'm praying that both Axel and I can remember how good that felt, to get through a lesson without all the unnecessary stress.

6 comments:

Becca said...

Wow, you are soooooo good!! I love reading about the processes you go through to find what works. Thanks for sharing all of these fascinating details, and I'm so glad this seems to have clicked for both of you!

My Girls R Angels said...

I so appreciate your insight into the bahaviors that our kids exhibit! Thanks so much, Leah!

Christine said...

That is great to hear! Triumph!

Taylor said...

Yay, Axel!! Good job!

I am SO HAPPY that things worked out for his school plans. Can't wait to hear all about him learning new things in that environment! :)

Laurie said...

Yay, Axel...... Yay, Mom!! isn't wonderful when you figure something out like that. Even though you know it'll be tested and might not work at some point..... having an understanding of what's going on is so helpful, isn't it! You're doing a great job with Axel!!

Cindy said...

Great job at being persistant until you found the key to changing his behavior! And thank you for sharing the process. That's just amazing.