Getting it together to pay attention

Joint attention is very simply, the process of sharing experiences or information with another person using non verbal communication.

It seems that joint attention is really at the root of the common issues relating to R.‘s autism.   Not long ago I was wondering exactly what happens in my daughter’s brain when she is progressing developmentally.   It is a simple, and likely not complete answer, but it seems to me that improvements in her joint attention skills have led her to be able to speak, to imitate and process receptive language better.  It has helped her play skills and probably several other things.

I can’t help but wonder what exactly led to R. gaining joint attention skills.   Again, this is a simple and incomplete answer, but I think it has to do with sensory processing.

Back when R. was two, she was so overwhelmed by processing the sensory information she was receiving that she really could not process much.   She could not pay attention to much of anything in her environment completely because she was caught up in paying attention to herself.

At the time her running, jumping, crashing and other sensory seeking behaviors made her appear wild.   But in retrospect I realize that she was really quite determined to give herself the input that her body was seeking, and that needed to be fulfilled before she could process anything.

When she was three we dropped her nap, and I think things really improved for her after that.  It could be at least partly coincidence, but I do think that it did help her.   She has always been a good sleeper, but not so good at the waking up transition.  So when she napped, she was going through that transition twice, I think she lost a lot of time to that (and sleeping) that is now taken up by activity.

Shortly after turning three, she began to imitate and developed echolalia.   She also began to be anxious in some public settings and to exhibit her first sensory avoiding behavior – putting her fingers in her ears.

I don’t think it is a coincidence that when she was finally able to pay attention to more of her world, she found it kind of scary or at least overwhelming.  I think that putting her fingers in her ears gives her great power over her environment.

Ultimately I think that is the best answer.   R. is able to process sensory input because she has found ways to tolerate and likely understand the information on her own terms.  Even when she was at her wildest, I always had the impression that R. knew what kind of sensation or activity she needed.   As she gets older she is even better at knowing what she needs, and she seems to get her fill faster.

It makes sense that she has to learn how to process all of the information that she is receiving from her body and senses. For her to be able to pay attention to anything outside of herself means that not only does she need to be able to process this information, she has to process it in such a way that it is not distracting to her.

I also think that just because she can process her sensory information better, does not mean it is easy for her.  I suspect it also is probably not exactly the same for her all the time.  Some days things bother her more than others.

When we were on a general school tour the principal told us that we would be entering several classrooms in progress.  She instructed us to go all the way to the back of the room, so we would be out of the way.   I’ll admit my elementary school experience is decades old, but I could not figure out at first glance where the back of the room was.  The desks were set in tables, none facing in one direction.  The kids were sitting in groups all over the room, facing different directions.   I wasn’t alone in my confusion.  After the first classroom I went to the back of the line, so I could follow everyone else, and the same thing happened in every classroom.  Whoever was first just stood there, not sure what to do.

Maybe that is how R. sees the world, it is just a jumble of information that she has to find some way to understand.

As a parent I have to keep learning how to accommodate and encourage what she needs.   I can try to prepare her for new situations or offer familiar supports.

I also need to manage my own feelings about the behaviors.  I really should not get annoyed that she is running around dumping all her toys out.  I should realize that she needs some physical activity throughout the day, and if I don’t help her find something to do, she will decide for herself and I might not like it.

One of the hardest parts is being able to interpret R.’s behaviors and help her learn to communicate exactly what she wants.  Putting her fingers in her ears never means that she wants to leave.  Even crying doesn’t always mean that she wants to leave.

We went to a birthday party at Lemos Farm.   She cried on and off for half an hour, every time she cried we would be ready to leave.   We were just about to say good bye when she hopped out of the stroller and started playing.  She had a great time and played for over an hour.   I’m so glad that we waited.

It is hard to know what to do to help R., how to react to her sensory needs.   It would be nice if there was a specific solution to sensory issues.  A special swing or apparatus we could all sit in and magically get over ourselves and pay attention.   But that’s not how it works.  Maybe I should take comfort in knowing that there is nothing that I have missed, no secret technique.

Why does she do that?

I’m sure every parent has to deal with some annoying habit or behavior from their child.   I think this is more challenging when your child has limited or no verbal ability.   I try to think that everything she does has some purpose behind it, no matter how strange it seems to me.   It can be hard to strike a balance between figuring her out and not spending all my time analyzing every move she makes.

Dealing with her sensory seeking behavior is easier for the most part.  She usually seeks out the same types of activities, and if I let her or redirect to something similar she usually gets it out of her system after 10 minutes or so.  Even a year ago she could spend 20- 45 minutes jumping on the trampoline, laying/rolling on the beanbag or under cushions.

She has been really obsessed with water play.  She will not let me do the dishes, wash my hands or anything involving the sink by myself.  She actually shoved me and said my turn.   This gets old quick, but it is better than playing with her saliva on the window which was a favorite activity just a few weeks ago.   Sometimes when I have totally had enough water play I can redirect her to play dough.    I think school is partly to blame for this obsession.  They have a water table and the teacher has them wash dishes and cars and dolls and their clothes.  She makes it very fun.

The chewing seems to come and go in intensity.  Sometimes I think it is in reaction to being overwhelmed.  Other times I think it is boredom.  She is getting better about not chewing on her books, chewy toys and access to toothbrushes have helped with that.  She also understands that she is not supposed to chew on books and will stop when she is caught.  What drives me crazy is when she chews on her sleeves.  I don’t know why those slimy sleeves bother me so much, but they do.  She was doing that all the time over the summer.   Now it seems like she only does it when her sleeves are wet.  And of course she hates having her sleeves pulled up to play in the water, so with all the water play her sleeves are wet fairly often.  I have found the cure is to change her shirt.  She can’t stop chewing on the wet sleeve, but she doesn’t chew the dry shirt, at least for the moment.

One of the most difficult behaviors to decipher is throwing.  Throwing things just for the heck of it can be fun, at least for small children and definitely R.  She likes to hear the sounds that different objects make, and she likes to watch where and how the objects fall.   She will throw things in anger, or sometimes it seems like she throws things just to exert control over something.

When she throws something in anger, I try not to show a lot of emotion unless it she’s tossing chairs over (thankfully that phase is mostly over) or doing something dangerous.   I have been working for years now on getting her to say something instead of throwing, hitting or screaming when she is angry.  I started with just saying Ohh or Arrggh, now I’ll say Hey or Stop.  I am hearing her say hey spontaneously occasionally.  I’m sure it will take a long time for her to learn to express anger.

The throwing that seems to be for no reason, or when she sweeps everything off a table or a shelf can be maddening because of the mess and because of my desire to know what she is thinking.  Autism Mommy Therapist wrote about her son in the post Ninety-Nine Questions, and  this helped me come to a better understanding about this type of behavior.  She writes:

I try to derail him from his compulsions to reorganize and recatologue because he can’t ever seem to force his configurations into coherent order. His attempts,sadly, seem only to leave him in greater distress.

With R., I don’t get the sense that she is in distress, it is like a restless seeking.  Sometimes she seems more frustrated than others.  But the idea that this behavior is an attempt to reorganize her world seems to be accurate to me.   It helps me decide how to respond.  I would like to let her do what she wants, to an extent.  At home I’ll let her go to town with one group of items – the contents of her toy box or a book shelf,  but I will put them away when she goes on to the next group.  Some people say that you should force the child to help with the clean up, but that is counter productive with R. at this point.  I find if I put things away, she will join in at least half of the time.  And I have actually seen her put a few things away on her own, although she does then often knock them back over.

This kind of throwing behavior is usually the worst on rainy days off when we are mostly stuck inside.  I think it means she is bored.  She is usually quick to become frustrated or angry during those times.   Often after school and therapy she just seems to want to do what she wants, she wants to knock things over and throw.  But she is incredibly happy, laughing, talking and singing, and engaging in some appropriate play along with the throwing.

Writing the Family Rule Book – Rule #1

I keep getting annoyed at E. because he won’t follow what I consider to be a simple rule for disciplining and communicating with R.  He told me to write a rule book, so here goes.

When giving R. an instruction, (An instruction is any time you are telling R. to do something, whether it is regarding misbehavior or not.  Sit down, come here, put down, are examples) only repeat the request twice.  After the first request, if she is not complying, move towards her, and repeat the request a second time when you are a hands reach away, if she does not comply after the second request, physically force her to comply.

So it looks like this:

R. is jumping on the couch.
I say Sit down, wait a second or two and move towards her.
She continues jumping.
I’m standing in front of her and I repeat Sit down and physically sit her down.

I’ve been using this method since R. was 18 months old, before we knew about the autism.  A Mom in my typical Moms group suggested it because she was tired of yelling all day.  In the beginning I was careful to use commands that told R. what she should do – sit down as opposed to what not to do – stop jumping.  It doesn’t matter as much any more, she seems to understand.  But what is the best part, is when I use this method I almost never have to say the request twice.  As soon as she sees me moving towards her, she will usually comply.  She does test me a lot, she’ll wait until my back is turned and start jumping again.  But that kind of testing seems like a good thing to see in a child with autism, so I try to be patient.

This can be an annoying method, because it means I have to stop what I’m doing to follow through.  I have to be consistent, especially regarding discipline.  But it is really worth it, she listens to me and to her teachers.  She also listens to E., but she would listen even better if he would be consistent about forcing her to comply.

I don’t mean to imply that E. is not cooperative in general about working with R.  I think that it has become one of my pet peeves to hear someone repeat things endlessly to her.

Happy New Year

I’ve been thinking back on the past year.  2010 was long and eventful.  It’s funny how things seem so different and yet also the same.  I was looking through pictures and I found two that really illustrate this for me.

Jumping at Home - Jan. 2010

Jumping at School - Oct. 2010