Clouds, May 2010

Clouds, May 2010

Monday, August 1, 2011

I don't need a slap in the face to see reality

     Just this morning I was thinking how I dread the day when Hayden is stronger and faster than I am. Lifting him using the hands-under-arms method is getting pretty tough, but if I use my arms like a harness I can still carry him. Even if he's resisting, I can put my right arm in between his legs and hook my left arm around his torso and at least carry him a short distance.

So our first struggle on this fine Monday was over the fact that Hayden wanted to play in my Dad's truck, and I wanted to take a shower before the physical therapist got to the house. (We are borrowing my Dad's car because the transmission went on my husband's.) Unfortunately the doors were not locked so once he realized he could get inside, he invited some friends to join him. Hayden put Curious George in the backseat with a couple other people from his toy bins. I was still wearing what I slept in, and did not want to go outside unless I had to. So, from the front door I yelled to him to come back inside. Apparently they all refused. 

Finally, Hayden got out of the truck at one point and I quickly pushed the lock button on the remote. Eventually, he angrily made his way back in the house. I closed, locked and bolted the door and took my shower. 

Our second struggle began when I finished getting ready. Now I needed to clean him up before the therapist arrived, and he didn't want to get off of his swing. I used my harness-hold to get him in his room and he fought me the entire time while I changed him. As soon as I was finished, he unlocked the double-locked door and went back outside. I was straightening up his room and making his bed when I heard the front door open. 

This time he was "washing" my Dad's car with his bare hands.

The physical therapist pulled up and he followed her inside. She came in with a scooter, and after H pushed about a dozen or so steps on it he was done. I mean, finished for the remainder of the hour. My original intention was to take him out to lunch today, but following his behavior this morning I was not brave enough.

Later on when it was time to leave for speech therapy, he was not only happy to go but anxious. "See Step-y!" he exclaimed. I said, "yes, you're going to see Stephie!" I heard how well he did when my mom took him there last week, so I was looking forward to seeing him work with her again. (We can only fit her in during summer schedule.)

He started out beautifully and then it turned to musical chairs. Then throwing his hat. Then laying face-down on the floor. Then whatever else he could think of to avoid completing any single task. Every so often he'd calm down enough that she almost had him re-engaged, but it never stuck. 

After forty minutes of this she asked if I was ok cutting the session short, and I agreed. Now, of course, he didn't want to leave. I had to carry him to the car and just as we were about to pull away, I heard Hayden say something. I turned around and his seat belt was unbuckled. I told him to put it back, but I couldn't tell if he was really trying or just faking it. Either way, it was still unbuckled.

I got out of the truck and walked around the other side, opened his door, leaned in to reach for the buckle, and he slapped me across the face. 

I grabbed his hands in mine, looked him in the eye, and told him he can not hit me. I buckled him in and we left. I had been hoping to take him to DD after speech, and I really did want an iced coffee, but he never cooperated with Stephenie and I thought was a bad idea. I settled on a diet soda from the closest drive-thru. On the menu board I saw that the kids meal toy was a mini instrument, and knew Hayden would love that. I got a 4-piece meal just so I could offer him the toy.

We ended up with a mini piano, which was perfect considering his current obsession with the keyboard from my sister. He immediately reached for it, and I said, "tell me you're sorry for hitting me and I'll give you the toy and the food."

He sulked for five minutes and then fell asleep. 

He woke up when I stopped at the mailbox. I told him a new car magazine came today. He wanted to see it, and I reminded him I was waiting for him to tell me sorry. When I pulled in the driveway I think he mumbled it, but it was low and whiney so I said, "what?"

He didn't answer.

I went around to the other side to get him out, and when I opened the door he said, "Sorry, Gad."


"Sorry, Mom!"

"Thank you, Hayden. Here's the mini piano, and your food, and the car magazine."

"Kicken in there?" he asked.

"Yes, there's chicken in there."

"Thanks, Mom!"

"You're welcome. Thank you for telling me you're sorry."

At this point I really hoped-- I thought-- we would end the day on a positive note. Until it was time to change him again and he had another meltdown.

After I finally cleaned him up I went to use the bathroom, and by the time I was done he was already outside "fixing" my Dad's car. He found two pieces of scrap wood, put one on each side of the passenger tire, and aimed his toy drill at the headlight.

I stopped him just before he broke something or potentially scratched the $@%# out of it.


I was on the phone with my sister a short while ago, and after updating her she asked whether or not we were still considering medication.

I received an email on July 27th, after following up on the status of Hayden's Clinical Trial participation, that they are still waiting for approval and hopefully it won't be much longer.

Not that we have any idea how the heck we're going to get any medicine in him (if you've been following my posts you understand), but on days like today I'm reminded that we likely don't have a choice.

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