Sensory, Behavior, and Relationships

I've been thinking a lot lately about Kamdyn's behavior.  Why does she do certain things?  What circumstances are surrounding the behavior? What is the environment like? What are the people around her doing? What common factors are occurring during the behavior? And when you step back and look at the big picture, it can be interesting.

Example #1:  People with Down syndrome have this stereotype about being so happy, friendly, etc.... all the time.  Of course we all know that's not true, because NOBODY can be happy ALL the time.  And I think Kamdyn just wants to make doubly sure people know that, because there are many times (probably multiple times a week) that we go to church with Kamdyn and someone offers a friendly hello to her, only for that person to get a firm "NO!" in their face.  Why?

Or

Example #2:  One day I announce to the kids that we are going to go to the library today, which is followed by a happy celebration, because my kids love the library.  We haven't been going as much lately, because taking all four kids with just one adult (me) on duty, isn't easy.  But I was feeling confident, so we did.  As soon as we got there, Kamdyn was on hyper drive, bouncing from one thing to the next.  She usually loves to sit down and "read" books, but she can't.

(A picture I took at the library a couple of summers ago of Kamdyn "reading")

She's too busy being pulled in every direction.  She's like a pinball.  And then, when my back is turned, she sneaks out, past the person at the front desk, through the automatic doors, onto the elevator, and you get the idea. Why?

These are just a couple of examples that I try to step back and examine, because I want to understand so I can help her. So Example #1.  Telling people "NO!" and shutting down interaction before it even happens.  She does this to adult and kids, alike.  Often, the more someone tries to engage with her, the more she will shut down and react this way.  I'm starting to think this is a sensory reaction.  She gets overwhelmed with the environment: people, noise, talking, lots of movement, etc, and she feels uncomfortable, so she reacts this way.  But part of me also blames myself a bit for this one.  When Kamdyn was little, people always wanted to hold her, and we let them. She was tiny and adorable and snugly, and everyone loved her.  I didn't think there was any harm in it.  When she got a little older, when people would hold her, she would immediately lay her head on their shoulder and suck her thumb.  People ate it up and thought it was endearing how she would snuggle like that.  It didn't take Brad and I long, however, to realize that she wasn't snuggling.  She wasn't happy, so she comforted herself by doing that.  I'm mad at myself now for ignoring it, but I didn't understand it at the time.  I didn't really know what sensory responses were at the time.  Now I know that she was shutting down.  And it makes me wonder if part of her reaction now is a result of what we allowed when she was younger.  She's rejecting interaction with people, because she's afraid.  She's afraid that they are going to pick her up or make her do something she doesn't want to do, so she shuts down the interaction before it's started.  The thing that makes me sad about all of this is that I don't want people to give up on trying to make a connection with her just because she reacts this way a few times.  She will open up as trust is formed.  I've seen it.  When she's comfortable, she will.  Not many people get to see the Kamdyn that we see, when she is able to be care-free and completely herself.  I hope they do.

And as for Example #2, there are no doubts in my mind that Kamdyn was on a sensory overload when we walked into the library.  Like I said, we don't go much any more, so we hadn't been in months.  It's a huge room full of shelves and shelves of books, computers, blocks and toys in the back, people.................... All of that bombarding her at once, and she was on hyper drive.  I don't know that there is anything I can do lessen that sensory experience in situations like that, because I'm not going to completely stop having those experiences.  I believe they are valuable experiences for all of my children.  And I'm not going to leave Kamdyn out, because she benefits from them as well, and  how can I promote inclusion if I don't practice it in my own family and daily life?  So for now I just have to be extra vigilant in those situations, use the tools I have (like a double stroller, squeaker shoes, and an alarm) and hope that as we expose her to those situations, she will learn how to manage the sensory input.


The double stroller is a life saver!


We have this Child Locator Alert System.  It doesn't allow the child to get very far from you before it alarms, so it can get pretty noisy.  I've seen a little about the Buddy Tag, and I'm interested in that one, because you can set the distance.  If anyone has one, I'd love to know your thoughts on it.


Understanding these sensory issues and dealing with them is definitely a challenge.  I would love to hear some experiences from other people.  What sensory issues have you seen in your child?  What strategies do you have in dealing with them?  What tools or mom hacks have been helpful to you?