“Rachel, you need to study your social studies vocabulary and take a shower.” “Remember you need to wash your hair really good.”  “Mommy loves you and is just trying to help.”  This is a real life back and forth conversation Rachel might have with herself on any given day. Sometimes she even says to me something like, “We were talking about the movie.”  “Who is we?” I inquire. “Rachel and me,” Rachel might respond. To this I would probably say, “Rachel, who were you talking to?” “Oh yes, mommy. I was talking to Rachel…. I mean myself.”  It is kind of funny but it can become a serious concern for families of individuals with Down syndrome.  Now, I am not an expert on much of anything. I am certainly not an expert on self-talk.  I am not even an expert on Down syndrome. Some days I am an expert on one girl named Rachel. Just when I think I’ve got it, she opens a new chapter though and here my learning curve goes again!  I share some tips from experience with this self-talk phenomena.

First, we have taken the containment approach. Like a high-powered offense in a football game – you may not be able to stop it but you may be able to contain it. When Rachel was in 3rd grade is when I noticed an upsurge in her self-talk. We had just moved to Kansas so that made sense.  I am not trying to be disrespectful or mean, but I didn’t want to see Rachel mumbling to herself in McDonald’s with people staring.   Society already gives ample ammunition for encouraging teasing so I don’t want to aide in this. She already has enough to manage so I started investigating.  During a brief encounter with the late and magnificent Dr. William Cohen, I asked him about it. His response was that we all talk to ourselves. Certainly true for me. How about you?  His next point was that most of us know not to do it in front of others because they might label us crazy or unstable. I also chatted with friends who have older ones with DS and learned that most but not all of them do the self-talk thing and learned some of their methods.

Second, we discussed and continue ongoing discussion about self-talk with Rachel. Because she is a very social creature and we know that she wants to be accepted, we go this route with her. We tell her that we know that she needs talk to herself to calm herself or reason through things. However, we have told her that when possible she needs to do it in private. We suggest her room or the bathroom. We are pretty honest with her and tell her that if she does this in front of friends or potential friends, they may think it is odd. This method has worked fairly well. As she progresses through her stages of development, the self-talk has increased. Complex situations create more stress and a need for more coping strategies. If she needs to do it at school, try to find a place away from others. Same at church or on outings. Of course, this can be challenging because the need for self-talk most likely increases when the environment changes or during stressful times like testing. I also notice it increases when we are really busy and she is really tired or doesn’t feel well.

Tip three would be to make sure you address the self-talk with teachers, close friends, mentors, church leaders, and others who may spend time with your child.  We make sure that we address it with school personnel because school has a lot of room for stress and the need for calming.  They tell us that overall, she only does it when she needs to calm herself or reason through a test or situation. She herself is pretty good about knowing to contain it. Teachers know to never point it out in front of peers but to gently nudge or motion if she is doing it. One of her teachers told me that he was fascinated by the way she used her self-talk to reason out the answers on a test.  She would discuss things we had used as prompts to help her remember an answer and then eliminate choices to come up with the answer. It is pretty fascinating because she can have an entire intelligent and intelligible conversation with herself where she plays both sides of the conversation. It makes perfect sense when you listen and you get a glimpse into what is going on in her brain. However, when you try to have that same type of back and forth conversation with her, the intelligibility is not the same. That mesmerizes me and leads me want to know more about this Down syndrome brain!

We try to be sure that people who spend a lot of time with Rachel know how to manage the self-talk. For example, Bethany is an adult friend of Rachel’s. Rachel calls their time together “Bethany Day.”  Rachel likes to know the plan for the day, for the week, for forever =if given her preference! If you deviate from the plan, you need to walk her through that. She usually adapts but she may need to process it. This is one of Rachel’s “Down Syndrome Grooves.” Bethany took Rachel out to get her nails done and to a movie. (I wish someone would take me to get my nails done and a movie. I mean really. What a life!) They were supposed to go to the movie first but the timing didn’t work so they had to flip the schedule. Bethany knew Rachel would need some time to process. She let her go to the bathroom and spend some time just working through it. I imagine the conversation went something like this: “Rachel, it is okay. It is not Bethany’s fault. You will still get to see the movie. You can pick whatever color you want for your nails.  It will be okay. Remember, mommy said to do whatever Bethany said.”  Bethany knew though. She knew and disaster was diverted with a little self-talk.

From time to time we still have to remind Rachel that we shouldn’t talk to ourselves in public or even in the car when there are friends around. Because she feels comfortable with her closest friends, I have noticed her using it around them some. Overall, we’ve all learned to just kind of go with it.  We know that if Rachel has not had much alone time for a few days that we need to find her some because she needs to have a chat with herself.  Sure there are days when it is maddening or even exasperating. Other times it gives us great insight.  Finally, we get quite a bit of humor from it.  It is just one more thing about some of our fascinating friends with Down syndrome that makes them unique, intriguing and perfect just the way they are.