Here comes spring break

Spring Break has an extra day tacked on as a furlough day, so it started on Friday  The school department is trying to save money.   School actually ends for the year before Memorial Day, so it seems like we are getting into the last stretch before the dreaded summer.

I’m still waiting to hear about ESY.   I’m fairly certain it will not be at R’s regular school.   Which worries me a bit, but if they can finally finish the construction over the summer it will be worth it.

R.has been saying more spontaneously.   When I would normally prompt her with a word, I can wait and give her an expectant look and she is saying a word more often.  The word I prompt the most is come.  I make her say it every time she hand leads me.  She is starting to say something as she pulls my hand some of the time.  But with E. she’s doing it almost all the time.  A couple weeks ago she was saying what sounded like Da cuh then last week it sounded like Duddy come, and now it is really Daddy come.  She’s also saying Daddy no.

She is labeling things, which is new.  I mean just naming an object she sees, not saying the word because she wants it.  She has really only labeled numbers, labels and shapes before this.  Mostly she is labeling animals and food.

R. has also developed some separation anxiety or something like it.  She has to know where I am at all times.  I don’t think she cared too much before.  Especially when we go out, she is constantly looking for me.  E. will be pushing her in the shopping cart and she will be craning her neck trying to see where I am.   I remember during our assessment with the ABA provider for early intervention, the program director told me that R. should be referencing me (looking for me) constantly.    Of course she wasn’t.

Someone always leaves the gate open at the playground, and I usually spend most of my time trying to beat R. to the gate so I can close it.  A useful side effect of this constant looking for me, is that she is not running away at the playground.  She runs off and she comes back, especially if I don’t follow her.   She also used to run right for kids on the swings.  I think she really wants to know what it would feel like to be smacked by someone on swinging.   Lately she’s actually been just watching the kids on the swing, and I’ve seen her stop short so she doesn’t get run over by a kid on a scooter, or kids just running around.    It’s like I could actually sit down at the playground, if she would let me.

Showing her how rewarding life can be

One of the reasons that people seem to get down on ABA, is the use of reinforcers.  I’ve heard it equated to animal training.   There is some truth to that analogy, and I’ve learned that is not such a horrible thing.

When we started ABA during early intervention, the program director spent a lot of time asking me and working with R. to determine what she really liked.  At the time, it honestly wasn’t much.  Other than balls or bubbles, she had a few stuffed animals she liked.  She liked watching Sesame Street, but Elmo and friends weren’t BFFs yet.   Naturally they wanted to use food items, and I bristled at this, but I compromised, and asked that they not use her meal time food as a reinforcer, only snacks and treat.  As worried as I was, the food reinforcers actually did not work that well.  She would quickly tire of whatever it was, and she was not always hungry.  She had sessions for 5-6 hours a day at that time.  If every therapist offered her snacks, there was no way she could eat it all.

The Program Director asked about using videos on the therapist’s Iphones as a reinforcer.  I said my only concern was that R. might be more interested in watching videos and cry when they were not available.   The PD said that if they were that motivating, they would do the trick.

The videos actually worked great.  R. was really motivated to watch them, and she quickly learned that she was expected to do something before she could watch one.  That sounds really simple, but there are really several things that the consistent use of a reinforcer taught her, even at that early stage.

  • There are things she wants that an adult has to provide
  • Her actions are directly responsible for getting her desires met
  • If she pays attention to an adult’s requests, and complies with them, she will learn the actions required to get what she wants.
  • She can wait for things she wants, even for a short time.

I know that there are some parents who think that children are praised, rewarded and bribed too much, granted these are generally NT parents.   So what is the difference between a bribe and a reinforcer?   The way I see it, a reinforcer rewards desired behavior after it is done.  A bribe rewards a behavior whether it is desirable or not before it is finished.

A good example is crying.  If R is crying and I know some gummies will make her happy, if I give her the gummies while she is still crying I am bribing her to stop crying.  I am also teaching her that the way to get gummies is to cry.   If I show her the gummies, and  get her to stop crying and say gummies and then give then to her, I am reinforcing her use of words.  I’m teaching her that yes I know what she wants to make her happy, but she has to use words to get it.  Crying doesn’t work.

Now R. is really in touch with the fact that she is expected to do something to get her requests met.  She is primed, waiting for a prompt to tell her what to do.  We have to be careful to wait to see if she will say the word spontaneously.  Sometimes I’ll tap the item, which is a mistake because she will copy my tapping, thinking that is the response I’m looking for.  Slowly but surely we are hearing more spontaneous words.

I think that we all respond to reinforcers and even bribes all the time without thinking about it.  It is really necessary to analyze all of the ways that we are reinforcing her behavior even if it is unintentional.   I gave R. a piece of colored chalk and a chalkboard and she scribbled for a while until the chalk broke.  She brought me the pieces, I assume she wanted me to put them back together.  I gave her another piece of chalk.  She broke the next one, brought me the pieces and I gave her a new piece.  I was watching her and the first two times it seemed like it was an accident that she broke the chalk, it broke while she was scribbling.  But the third time, she scribbled for a bit, and then intentionally broke the chalk in half and came to me for another piece.  Even though I had her say chalk each time, she had quickly come to the conclusion that breaking the chalk was the key to getting another piece.

I suppose that someone who is anti-ABA could argue that the faulty methodology behind ABA’s teaching has led my daughter to make incorrect generalizations.  But I really think that this is a reflection of how R. tends to generalize things.  She does not make the same connections that I would.  Her vision of cause and effect is limited, but with repetition and experience her skill in this area gets better and more functional.

Now she has the ability to understand first this and then that, as long as we are talking about something she understands.   This is really useful.  There are many opportunities to tell her if you do this, then you get that.   I am working on getting her to wait for me when she requests something.  She always wants me to drop everything and comply with HER request.  I’ll tell her first I’m going to have a sip of my coffee, then I’ll get you a cookie.

I also find that when she needs to do something new or different that she is aversive to,  if I explain it simply and give specific perimeters like counting- do this for a count of five, she is much more compliant.

Some people ask if ABA is constantly rewarding for desired behaviors, does the child spend the rest of her life looking for a reward for every task completed?   ABA does actually have a system of fading reinforcers and using a hierarchy of more and less motivating items depending upon the difficulty of task.    I’ve also found that while the therapists still use toys and food reinforcers, they also sing songs and do all kinds of silly games with R. that she likes.   She asks for these activities, so it is like her reinforcer is doubly rewarding – she is rewarded for completing her task, and she is motivated to do something social.

I don’t see R. becoming like a trained dog, looking to perform tricks for treats.  It’s more like she’s a social being in training.  She’s making her own study and practice (with our help) of how rewarding just the act of socializing is, and how crucial engaging with others is is to getting her needs met.   She’s also learning that while the world is filled with many unknowns,  there are also plenty of great things.

Best haircut ever

Friday was yet another day off from school.  I don’t think they have had two full weeks in a row of school because of holidays and furlough days.   I scheduled a hair cut appointment, because it was well overdue.  I probably should not have scheduled it the day after her annual doctor’s appointment.  After that experience I was totally dreading it.

This is R.’s third professional hair cut.  The stylist’s name is Hanan, and if you are in the area email me and I will share her contact information.  She is really amazing.   The first time R. screamed and fought the entire time, but she managed to get it done.  Hanan sang and remained calm and unflustered.  The second time she screamed for about two-thirds of the time.

We arrived right on time, not at all early and Hanan was waiting, her chair empty with a booster seat ready.   R. whined a little bit when I put her in the chair.   We used a cape to wrap around her waist and tied it to the chair. (We do this every time).  Hanan had a portable DVD player set up and playing on her counter.   R. refused the cape over her clothes and we let her.  A little hair is no big deal.

Usually I hold her hands and E. holds her legs.   I held her hand and rubbed it, and she sat there and let Hanan cut her hair.  She did not cry or scream at all.  I was really just holding her hand, more than forcing her to sit, and her legs did not need holding.  She sat there calmly and got a hair cut.   By the end she was actually watching one of the other ladies get her hair done.

Of course I am thrilled, but I can’t help but wonder why the hair cut was so much easier than the doctor’s appointment.   I find getting a hair cut more pleasant than going to the doctor.  Maybe I should not compare the two experiences.

Doctor this

We had the most torturous annual checkup yesterday.   Everything just took forever, we were there for an hour and a half.   It was partly because we were seeing a doctor who is not our regular pediatrician.  He was nice but slow and not prepared.

R. was totally uncooperative.  She fought being measured, weighed and every thing else.   The nurse started by bringing us into a tiny room to get her ears checked.  They have never done this before.  I informed the nurse that she had autism (you would think it is on her chart!) and that she did not answer questions.   She said oh that’s okay, she just has to wear these headphones and raise her hand when she hears a beep.    In the time it took her to say that R. reached for the headphones.  They had blue and red ear pieces and probably looked interesting.  We tried to get her to wear them, and then to remove them from her possession, both of which made her scream.  So by the time we got into the exam room she was in a mood.

I’m just about at the point where I can not physically control her when she is fighting.  She is 41.75 inches tall, that is more than half my height.  If I hear Just hold her on your lap Mom, one more time…   We finally had to resort to the cruelest method for all involved so that the doctor could check her ears and body.  E. and I held her down on the exam table and the doctor did what he needed to.  That was not as easy as it sounds, even with the two of us.

I left the office determined to find a more autism friendly place.  But now that I’ve had a night to sleep on it, I realize that I need to take total control of these visits.  I plan to talk to her regular pediatrician about this, but here’s my ideas so far.

Call the office before the appointment and get a list of every thing they will do that involves R. – weighing, checking ears whatever and I’ll make a chart for her with pictures.

I think we need to start playing doctor at home – measuring, weighing, and wearing headphones.  The only thing she did not protest was being checked with the stethoscope.  She has a play one which I brought, and the doctor spent time “checking” E and I, as well as Ernie and Elmo.

I think I will put R. in a dress with no pants for the next doctor appointment.  She hates having her clothes taken off.  She doesn’t like her legs bare, but its time for her to be a California girl.

The doctor spends a lot of time asking questions and discussing the responses.  This is all good, but it is a long time for R. to wait.  I think I’ll see if I can get them to let me go in and answer the questions before R. comes in.   E. can take her for a walk.

This sounds awful and cruel, and I hesitate even to write this, but I wonder if there is some way to strap her down on the exam table.   Straps would hold her more consistently and enable the doctor to get everything done faster.  I think she would like the feeling of the straps more than E. and I holding her.

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.

She’s four years old today

R.’s birthday is today, she is four years old.  I realize that she is still a young person, but it seems so old at the same time.   From this point on, she will have spent more than half of her life as a person with autism, and in the presence of various therapists and professionals that the average child does not encounter.

I feel differently about this birthday.  I think in a way, I dreaded all the other birthdays.   It was like each birthday was a formal reminder of all the unmet milestones.   I don’t know when it happened, but recently I started feeling differently.  I’m actually kind of excited that my baby is turning four.  Sure I wish she could tell me what she wants for her birthday or if she would like a party or particular activity.   I could fill pages with all my questions and concerns.  This year I want to celebrate that I have known and loved the wonderful person who is my daughter for four years.    Every day I learn something more about her and also myself.

We had a small party at home, I just invited another autism family.  We got her a few balloons and they had the most fun with them.   Her friends were so cute wearing the party hats.  R. wanted no part of wearing them, but she enjoyed everyone else wearing them.

She actually ate some of a cupcake.  I have never seen her touch anything with frosting before.  I wonder if she learned that at school.   Foolishly, I did not think she would have any interest in them, and I left them on the counter.  E. caught her,  and rescued them.

Elmo has a new home

R.’s birthday is on Monday, and my Mom has been wanting to get R. a dollhouse for a while now.    We put it together and gave it to her yesterday so she would be able to play with it this weekend.

She noticed it the second she came in the house.  She was all smiles and saying oh yay while she investigated the entire house.  The house came with a Mom, Dad and twin baby dolls.  She loves the Dad doll, she brought him to dinner (a space usually reserved for only Elmo and Ernie)

The dollhouse is the Fisher Price Loving Family Dollhouse.  My Mom and I spent a few months researching the dollhouses and this seemed like the best one.  I do kind of wish it wasn’t pink, but I think R. likes that it is. She likes pink.  The house was easy to put together, and it is very sturdy.  She has been trying to sit on the side rooms.  I guess they do kind of look like a seat.

The house has no electronics, which is fine with me.  All the furniture seems to light up or make sounds.  I do think it would have been nice to have a working doorbell, even an old school no battery one.

And another meeting

We had our monthly ABA team meeting yesterday.  R.’s teacher wanted to come with us, so we picked them up at school.   R. seemed to want to show me around the room, she kept bringing me over to different things.

She brought me over to the toy area, pulled out a play phone and held it up to my ear.  I think this is quite amazing because I’ve been trying to figure out how to teach her about the telephone.  Every time I call someone and get them to talk to her she looks at the phone as if it should have a screen, and usually hands it back.

The temporary classroom is smaller than their other room, there is no sink or bathroom.   The teacher said that they started taking the kids to the cafeteria for lunch and it is going really well.

The supervisor and one of the therapists were out sick, and the behaviorist had not seen the new IEP (yet to be signed, because I just got the final copy today.).  So there were a lot of things that did not get covered, but it was good to have the teacher’s input.

We talked even more about the manding progam, and moving beyond the word want and noun, to play, drink eat and more specific verbs.  It seemed to me like we were worrying the same bone as last month.  But the teacher and behaviorist were able to talk about the reasoning in detail, and I think that helped everyone.   The behaviorist wanted to make sure that enough time had been spent on one word mands, in case R. was thinking two word mands are just one long word.  She had the teacher and I list words we hear spontaneously, and thought there were enough to proceed.

The behaviorist said she observed during recess recently.  R. was playing a drum with some other girls (in the gen-ed glass)  She saw the behaviorist and approached her,  obviously recognizing her and showed her the drum.

The teacher said that she is teaching R. to tap her on the shoulder and say her name instead of tugging on her hand when they are seated together.  I saw this in action several times,  R. tapped the teacher on the shoulder and said her name!

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.

Fun and changes at preschool

R.’s teacher has been able to get some new items for the class using Donor’s Choose.  A light table is one new addition.  I’m surprised how much fun the kids have.  R. made the design on the table, whatever it is.

There is construction going on at R.’s school.  Her classroom is being renovated so on Monday the class will be in a different classroom for two to three months.  I was able to see the classroom while it was still inhabited by another teacher and class (who knows where they are going).  It is smaller and darker than R’s old classroom, and it has two doors.   The teacher assured me that she would have alarms on the doors, like she had with the one door they had before.   She is very good at getting what she needs, but I know the move is stressing her out.

The classrooms are old at the school.  I’m told it has been forty years since the last renovation.  I’m glad that they will eventually get brand new classrooms, but it bugs me that the teacher has to be bothered with a move twice in one school year, I know it must take her energy and attention away from teaching.

I went in and helped with packing up some of the classroom, and I’ve offered any other assistance she might need.   I’m sure it is going to be a tough time on Monday morning, getting all of the kids to go to a new classroom.  I can imagine R. pulling and yelling to go to the place she has gone every morning for almost a year.