Last night Chris and I attended a seminar that was at the Special Olympics facility, put on by the Central New Jersey Down Syndrome Association, and presented by Dr. Pipan, the clinical director of the Trisomy 21 clinic at CHOP. Those of you that were at the the NDSC conference this past summer in Washington DC may have heard this talk by Dr. Pipan on behavior issues in children with Down Syndrome, and I didn't realize that Chris and I had heard some of it until she started speaking. We didn't actually hear much of that talk because that was one of the seminars that we were worrying about what the kids were doing. I was really interested in this topic as we have been presented with some behavior issues lately that we have been addressing and just wanted as much information as possible.
I found this presentation to be extremely useful for us, but it's also one of those situations where I have an abundance of information and not really sure on where to start with it in our own house! Dr. Pipan first addressed the multitude of behavior issues seen in children with DS (and typical children as well). Most of us could identify different behaviors without needing a list. The interesting thing was that she also discussed the "why" which included sensory, cognitive, social, communication and emotional issues for children with DS and other things like to get what the child wants, get out of doing something they don't want, and getting attention in ALL children. After speaking about the all of the possible "whys", she also addressed possible solutions to these issues.
There were a couple of things that stood out for us specifically addressing behaviors we see in Colin. One of the behaviors that was listed was something called "dangling" and she explained it as though the child was literally hanging an object in front of them and just letting it dangle or hang there. I never thought of this as a behavior before, but is something that Colin does all. the. time. Most of the time, Colin seems to do it when he is bored or most especially, tired. He typically will take a stuffed animal and just let it hang in front of him and will bounce it up and down over and over again. She addressed possible reasons for this behavior as sensory seeking (definitely an issue for Colin), sensory processing difficulties, inability to organize activities or just boredom. What I found interesting is that this is a behavior that we have literally seen Colin do for 30+ minutes straight but NEVER thought much of this. While I think this may be a boredom/being tired issue, I can see it being a self-soothing sort of mechanism and also potentially being because of an inability to organize activities. Now, this is not saying that Colin never decides on activities himself because he certainly does (especially when it comes to causing trouble) or initiates activities with Kailey, however, I have noticed through the past few years that there has never been a specific toy or activity that Colin will try or seek out on his own. In addition, I will often see Colin on the camera at the daycare sitting off by himself "dangling" and then sitting there by himself the entire time. Sometimes I think he just needs help figuring out what activity he could do instead. Some of the solutions were obvious like helping him organize an activity, ignore/redirect, have an activities schedule to keep him busy or just ignore it when there are things you want to get done (because it's not necessarily a bad behavior but there are certainly reasons behind it).
Another issue we are starting to face lately is the "eloping" behavior, or going off in a different direction than intended. Now, I don't think that Colin is necessarily a runner, but, I think that he sees this behavior as a game (he is usually laughing when he darts from the driveway to the street, or when we are walking down a sidewalk and he turns and runs in the other direction). However, it clearly is a safety issue which we are addressing. In fact, for the first time since April, Colin was scolded at school (public school) for walking out of the classroom. They watched him walk out and let him go a ways to see where he would head and noticed that he was smiling/laughing. When they got him, they talked about safety in a stern voice. He knows this is something he shouldn't do which is evident by his behavior, but he still needs to learn.
So why this behavior? Well, another reason could be the cognitive delays like difficulty shifting attention (behaviors like kids don't want to leave preferred activities, slow processing (takes a longer time to think things through, selective attention to preferred interests, difficulty problem solving, etc. These are definitely things that we face (particularly with potty training - there is ALWAYS something he would rather do) and I can see that he has some difficulty thinking things through sometimes. As Dr. Pipan said, ALL kids never think about the past or see the future, it's only the present. I could literally comment on these things for paragraphs in things I see in Colin.
Solutions to the cognitive aspect are helpful. She mentioned things like visual cues (Chris and I are going to get a stop sign for the end of our driveway, right in the middle since Colin knows what stop means), social stories (taking pictures so that you can prepare your kids for what will happen next - I was thinking I could do this for potty training, showing Colin that he will sit on potty, then ____ preferred activity he would like to do) so he sees what comes next, transition songs (like "clean up clean up everybody everywhere!", etc.), allow time for processing, visual timer so the kids see the color change when it's time to move on to next activity, etc.
There is so much I got from this, so we need to figure out how and when we should try some of these solutions. It's always helpful to know "why" some of the behaviors happen the way they do...If you are interested in more information, feel free to email me and I can send you more of my notes! There is just way too much to keep organized in a post without babbling!