January 16, 2013

Setbacks, Regression and Off Days

We had been moving along at a nice clip. Moe was doing well, sleeping better and most of his aggressive behaviors had all but disappeared. He has recently begun answering "yes" and "no" with a head shake or nod and was verbalizing with intent more often.

Then things began to fall apart. Starting right before the new year, Moes started waking a lot during the night. He stopped trying to talk (though he is still pointing and nodding). And then some of the aggression returned, the kind of keep coming at you, scratching and hair pulling, we hadn't seen in months.

Just long enough for me to believe it was gone for good.

This is when it gets hard. When it starts to feel like all our hard work, both mine and his, has gone out the window. When I question everything, when I wonder if it is time to double down on what we're doing or throw in the towel and start over.

The hardest thing is not knowing why. Certainly the sleep and behaviors are linked, but what is the root cause? Is this just a temporary setback because Moe isn't feeling well? Is he not sleeping because he's processing all he's learning and beginning to understand? Are his behaviors a result of increased frustration at having more to say and being unable to say it? Or is this a real regression?

The weekend was tough. I dreaded Monday. I absolutely hate taking Moe to speech therapy when he's so aggressive. When he's misbehaving during ABA, I feel like that is what they are, at least in part, there to work on. They are behavioral interventionists. But during speech, I just feel bad. (Our SLP has an ABA background so she in unfazed. This is all me.)

But Monday's speech session was one of his best. He really participated. He had no negative behaviors. The rest of the week has been good so far. A little bit of hair pulling and scratching, but much less frequent. And he's working hard again.

So what does it all mean? I have no way to know. Maybe he's just testing us, seeing what he can get away with, like any five year old might. All we can do is go back to the techniques that have worked in the past, continue to help Moe learn to communicate and move forward.


  1. The one step forward, two steps back. I know that dance.
    Someone told me a while ago that they always see what seems like regression right before some big gain, and I have noticed that with my own kid. Maybe it's that? Sending hopes for a good rest of the week and weekend.

  2. In my world, in my experience with my daughter.... regression no matter how horrible it is will lead to some type of progression in another area. Lot's of hugs, I know it's hard but you'll see something different.

  3. Ugh. So frustrating. I've seen a lot of setbacks with Katie this year. We went from being able to express frustrations to knock down drag out kicking screaming throwing herself on the floor melt downs. I still haven't figured out what is causing them though they are coming less frequently. (((hugs))) to you for continued progress.

  4. So difficult, Jen, but I am so glad he is doing better this week. When we are together in March, remind me to talk to you about PANDAS/PANS in my OCD patients - I wonder a lot about this phenomenon and whether it might be present for other disorders as well. It will be interesting to get your take on it. ocfoundation.org/pandas

  5. I love this story. It reminds me of my son Matthew, who all too frequently, we couldn't understand, and tried desperately to help. Finally, I decided that I was the disabled one - he was trying to tell me what was wrong even though he couldn't speak - and I was just unable to understand. But, he kept trying, and we kept trying. And, we loved each other so much...
    I will continue to follow this blog.
    Donna Kirk www.donnakirk.com

  6. We have setbacks like you are describing whenever there is something big going on, or a break from school. The holidays, spring break, summer break, - these are the times when my son goes backwards with crying, screaming, and general defiance. It is so hard - I really wish school could be year round. As much as I love spending time with him at home, it is so disruptive to him that I think it would be better to just have the same schedule every week, all year.

  7. The down times and the not knowing can be some of the hardest for sure. Here's to more venti or grande days ahead!

    Oh BTW...you've been tagged! Go collect your button here:

    Please don't hate me :D

  8. Look in his mouth and throat. My kid did this for a couple of yearsbefore I figured it out. I thought she was having cycles of regression. Turns out she was medically ill - not exhibiting a bunch of "behaviors" to "extinguish".

    At my house, it is either strep throat or a red sore throat that LOOKS like strep but tests negative, or it is hand, foot and mouth disease type ulcers in the mouth and throat.

    1. Moe has had strep before. He didn't exhibit any signs...until we started the antibiotics. Then he was incredibly aggressive. With Moe right now, the behaviors are pretty obviously communication. Because he is non verbal, we are working on giving him ways to say no, or all done, without scratching, biting, or hitting.

  9. Siiigggh, I can totally relate... kids with autism are such a mystery, Dovi has all kinds of stages & phases, and the therapists drive me crazy with their comments in the notebook... I DONT KNOW why he's been mouthing things, or being a little jumpy today, or low appetite... I know the same as the teachers know... stop driving me nuts. Theyre a big massive silent enigma...


I love comments! Respectful disagreement always encouraged.


Related Posts with Thumbnails