Wednesday, May 27, 2009

Our story part 13: Small steps

Skipping ahead again, back to Little Bitty:

Little Bitty’s regression didn’t stop just because we had recognized it for what it was; it seemed to take more and more effort to get Bitty’s attention and draw him out. And with the loss of communication skills, his frustration grew and the meltdowns began. I longed for his 2-minute angry dance when he began having scream-fests that lasted up to 2 hours.

Sometimes I have wondered what it must have been like for him. As hard as it was to see him losing skills and going from very friendly to quite detached, I can't imagine what it must be like to be so young and find communication more difficult every day. To find that you used to know how to ask for something, but now you just can't seem to do it. Words people said to you used to make sense, but now they seem like gibberish. Is that what it was like for him? I guess unless he remembers and eventually becomes verbal enough to tell us, we'll never know.

I remember he seemed so frustrated that I couldn't read his mind. It was as if he was clearly picturing what it was he wanted, but couldn't find any way to communicate it to me, and the more I tried to guess the more upset he got.

He also began to show more obvious signs of sensory / motor issues. He no longer showed much interest in coloring, and when he did he used a fisted grasp rather than the tripod grasp he’d had early on. He started licking the sidewalk. And the asphalt in the parking lot (gross). He could drop to the ground in a flash, so it was almost impossible to grab him before he could put his curious tongue to the ground. He seemed to have an extremely high pain tolerance – he once burned his hand (long story, another post) and didn’t cry. At all. In fact, he seemed almost unaware that he’d been hurt (and from the looks of it, he should have been aware). On the other hand, he dropped to the floor in hysterics if someone dared to run the microwave or hair dryer (they both had a similar sound, which apparently his ears did NOT like).

We had difficulty getting him to eat; all he wanted to do was drink milk or juice. He had a very short list of "acceptable" foods, but from day to day we could never be sure if he’d eat even those. He didn’t seem to make the connection between not eating and the hunger pains he felt, because even when he’d gone all day without eating and it was painfully obvious that he was hungry, he’d cry and scream but still refuse food. We even got desperate enough to try to sneak little bites into his mouth, hoping he’d eat it once it was there, but as you can imagine that just made him mad :(. When he finally decided to eat, he’d eat all day. We kept a close eye on him and kept his doctor informed, but at each checkup his growth was still on track.

He got fixated on things, like opening and closing doors, or the stack of DVD’s that he carried wherever he went. He started having sleep issues. Sleeping through the night became a rarity (again) as he’d wake up at 3am and stay up for hours. Sometimes he’d cry the whole time until he finally wore himself out and went back to sleep (just about the time we had to get up for work / school). Other times he’d be in a good mood but wired, refusing to go back to sleep and insisting on playing or watching Yo Gabba Gabba (thank goodness for DVR or we’d have had more meltdowns on our hands).

It took time, but we started to see small gains as he progressed in therapy. He learned a couple of signs, "more" and "help." We tried to teach him other signs, but he seemed to have as much trouble using signs as he did using verbal communication. Some days he did great in therapy, some days he was pretty uncooperative. He still had a lot of catching up to do.

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K on May 27, 2009 at 8:09 PM said...

your post strucksuch a chord with me - the horror of my memory of regression has been supplemented with my sadness at what it meant for R :-(

Wholesale Printing on June 19, 2009 at 1:58 AM said...

I love that you are really patient and you do all your best to help him along the way. Small steps eventually will get you to where you need to be. And no matter how small the steps little Bitty will make, this will ultimately help him achieve or learn something.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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