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.

Observing motor group and recess

We went to R.’s school today to observe motor group and recess.  She was excited that we drove her and went into her classroom.

The motor group happens once a week and it is run by an OT and a PT.  It is only half an hour but they do many things.  They started by sitting in a circle and passing a ball back and forth.  They did yoga poses, R. was mostly resistant.  Which did not surprise me, but I have seen her doing some of those poses at home.  Then the kids sat on scooter boards and had to cross the room and match a colored bean bag to a colored mat.  R. can actually do this now, she was aversive to the scooter board at the beginning of the school year.   Next was an obstacle course which included jumping on a trampoline, rolling down a wedge mat, climbing an A frame ladder (something else she would not do at the beginning of the year), walking a low balance beam and throwing bean bags into a hoop.

As if that wasn’t enough, they did fine motor tasks at a table.  Each of the kids seemed to be working on different things.  R. had to use tongs to pick up tiny discs that the OT was holding in different positions, and then she had to put the discs into a cup that the OT kept moving.   She did this really well.  I definitely got the impression R. likes the fine motor portion of motor group best.

Then we went with them to recess.  I watched her line up with her back against the wall with the other kids when instructed. She held on to the teacher’s rope thing with her classmates to walk to the school playground.   She was super excited to have us with her, she was jumping up and down and smiling, and she dragged me all over the playground, showing me around I guess.

There’s a typical preschool at the school, and a steady stream of classes came in and out.  All the teachers seemed to know each other and all the kids, which was nice.
She was a little overwhelmed when there were lots of rowdy kids running around her, but she was also really interested in them – running away and coming back for another look.  She wanted to join a group of typical kids and one of her classmates playing ball in a circle with their teacher.  So I sat with her and helped her play.  She stayed with it for almost ten minutes.   She really wanted to play at the water table, but the rule is that the kids have to wear a smock and she will not wear one.  She did not cry, it was obvious she is familiar with the rules.

The teacher said she is going to work on creating and teaching R. and other students specific play scripts to use with the typical kids.   I think that sounds like a good idea.  I hate to generalize like this, but it really seemed like most of the typical kids would do anything the teachers suggest if it is fun and gave them some attention.

Made it through the IEP meeting

I survived R.’s second annual IEP meeting.   I don’t have a copy of the final IEP yet, they are still working on it.  The meeting lasted two and a half hours, the time flew by until the last 30 minutes or so.

The most exciting thing to me is that R. is now going to be getting OT.   In addition to the class fine/gross motor group, she will get individual therapy – 30 minutes a week.  Our school district works on what they call a 3:1 delivery model for direct therapies like OT and ST.  This means that the students get therapy three weeks a month and the therapists work on consultations and preparation.   I was expecting to maybe get just the 30 minutes of consultation.  I still have to decipher the OT assessment, I’m sure I’ll write more on this.

Currently R. gets ST twice a week, once individual and once in group.  She is not taken out of class, and at this point I do not want her to be removed.  The ST works with her individually in the classroom.  The ST said that to work on R.’s turn taking and peer related goals she would bring another student into the individual session.  It sounded to me like she wanted to change the IEP to be twice a week of group therapy.  I told her that I did not have a problem with her doing what she described, but I did not want to change the wording in the IEP.  I said that next year I might want R. to be removed from class for ST, and this would leave things in place for that.   She gave me the strangest smile and agreed.

Last year at our first IEP I really fought for that individual session.  At this point I think it probably is better for R. to have peers involved in ST.   I don’t want that written into the IEP, because I don’t know that it will be the best way in the future.  At least I have that option to push for the individual session to be one on one if it seems necessary.

R.’s ABA was continued at the same level of hours until her next annual IEP.   Last year they gave her six months of ABA with a required addendum IEP meeting to renew.  I did not think they would reduce hours or discontinue service, but you never know.  It is a relief to not have to worry about that for a year.

This is the first IEP meeting where everyone who attended really knew R.  Even the general ed teacher knew R.   She did not stay for the entire time (I gave permission for her to leave, technically I could have refused, but there was no reason to.).  She did give some input about activities that could be done on the playground to help with turn taking and peer related goals.

Everyone was positive and had a lot to say about progress.  When she started preschool last March she was non-verbal and reliant upon PECS.  She was not compliant, was aversive to a visual schedule (despite using one at home).  While she is not talking as much at school as at home, she is definitely able to repeat words and has some spontaneous speech.  She complies with simple instructions, she will stop doing something or take her hands off.   She uses the visual schedule, can pick her name out and transition from activity to activity.

The teacher, gen ed teacher, OT and ST all said that R. really enjoys being with the other kids in her class and in the other classes.  The OT said she thinks R. prefers to do activities with her classmates than one on one with her.

I actually learned some things R. can do at school that I have not seen at home – she hangs up her backpack and jacket after removing them.  (I’ve only seen the removing.)  She can wipe a table with a cloth.  That gives me so many possibilities, starting with window washing this afternoon!

She can pick her name out of a field of ten, and the OT thinks she can write the letters in her name with assistance.   They added goals related to handwriting, letter, number and symbol recognition, and one to one correspondence.  Basically all the academic goals I thought should be added.   I asked about a counting goal and they said they thought she could count and they did not see a need for a goal regarding she could already do.

They did make the change to make the goal I wrote about into two goals.  One goal for initiating with peers and another for adults.  I also asked them to add the qualification in a familiar situation, so that if this gets mastered we can track if she can do this in a unique situation.   I also asked about a waiting goal and the teacher said that from her perspective she was happy with R.’s ability to wait.  She described how R. would line up against the wall with the other students and look at books while waiting.

She made progress on all of her goals except drinking from a straw and using utensils.   The OT really wants to work on using a fork.   I suggested that they we try using the fork as a play utensil, picking up putty or something she knows she does not have to eat.

I also saw the new temporary classroom.  The teacher said that R. transitioned to the new room without a problem.   It is smaller, they had to put the class trampoline in the hallway, much to the delight of students in all the other classes.

The Magic Disc

The fitball disc

I bought a fitball disc for R. recently.  It is very similar to the sitting/balance discs in the therapy catalogs.  It is a little larger and one side has raised nubs and the other side is smooth.   I thought it would be useful for R. to put her feet on to give her extra sensory input.  I also hoped she might stand and balance on it or at least walk on it.

She did not know what to do with it at first and wasn’t real impressed when I sat or stood on it.   I stood it on one end and made it spin, and that became a favorite game. She would let me use the disc to give her pressure on her back or feet.   Then one day I found her happily running back and forth in her room landing on the disc in the middle each trip.  I noticed she had pulled the plug out and completely deflated it.  She wanted to use it flat and she fixed it herself.  I inflated it just a little bit and she has been finding all kinds of uses for it on her own.

She always seems to know exactly which side she wants to use.  She sits in her beanbag or in my lap with her feet on the disc.  She sits on it bottom down, lies down on her belly or back and even rests her face on it.  She puts pillows on top and then lies down or rolls around.  It gets most use as a stomping pad in an obstacle course.  She recently found her old baby changing pad and a wedge that goes under the crib for newborns and added them to the obstacle course.