Keep to the schedule

Our supervisor emailed me to change R.’s therapy time for yesterday and I agreed.  The therapist showed up at the regular time, so I mentioned the supervisor’s email and she said she had just received a call from another parent asking their schedule.  So she stood in the hall making phone calls to determine where she was supposed to be.

I was in R’s bedroom, where they have her sessions, and she pushed me out of the room.  She grabbed the therapist’s bags and carried them into her room, hand led the therapist into her room and shut the door.

The therapist told me that she then independently checked her schedule and sat down at the table, ready for work.

I’m back

I did not mean to let so much time go by without updating.  My parents visited from the East Coast and it has been a busy month.

R. is talking more, she is repeating, saying things spontaneously and it is much easier to prompt her to speak for things that she wants.  Here’s an example:

R. grabs my hand and pulls me to go where she wants.  I take a step or two towards her and lean down, look her in the eye and say  Come Mommy.  Come.

R. says Come.  She usually keeps hold of my hand, but she is starting to let go and trust that I am following.   When we have arrived at her chosen destination, if she wants something open or she wants me to sit down she will say open or sit most of the time without prompting.  I’m so excited every time that I still rush to comply with her request.     If she is asking for something else, I have to figure it out and prompt a word.  She’s been asking for the curtains to be open or closed, the lights on or off.

With this new ability to repeat words, she seems to also be developing echolalia.  If someone says, say bye, she will say say bye.  I don’t see this as a problem yet, she is echoing immediately, and it seems like this is necessary for her to understand and practice.  Sometimes when she repeats words she has this look on her face like she is trying it on for size.

She did really well with my parents’ visit.  They stayed with us and she kept them busy nearly every minute.  It was interesting to see how she was able to communicate with them and get them to do what she wanted.  They have not seen her in two years, so it was really like they were strangers.

We took them to R.’s school to see circle time.  It was strange, when I walked up to R. after class I reached my arms out to her and she gave me a funny look and ran off.  I had to approach her again and talk to her a bit. I don’t think she recognized me at first because she did not expect me to be there.

R. is back to jumping all the time.  She used to jump all the time when she was younger, but for over six months she has not been interested.  After my parents arrived she was a jumping machine, jumping on all the beds and her trampoline.  She is still at it, I’m not sure what has changed.

She’s also been sticking her fingers in her ears.  She has never done this before.  I wonder if she just figured out she could do it.  Sometimes it makes sense, like if she doesn’t like a song or something is loud.  She’ll be playing her keyboard and then she’ll stop, put her fingers in her ears and grimace,  she’ll repeat this a few times and then finally she will play with a smile.   She’s also been doing it on the bus and in the car.

The sweet sound of her voice

For the longest time it was so shocking to hear R. say anything beyond babbling.  It reminded me of when she first starting moving around how strange it was to find her in a new place.   But it also made me think that by not expecting her to speak, I was missing out on opportunities to encourage her.

It can be so emotionally draining to coax words and communication from my child.   When I get no response it feels like a double failure.  I tend to over-think things, which is probably obvious from this blog.  A plan of action really helps me, and being consistent seems to help R.

After pestering our ST and ABA therapists with questions, I decided that I would focus on really encouraging communication regarding things R. is asking for, or manding in ABA speak.    I will say a word for what she wants, repeating it in what I hope are interesting ways.  Then, as per Hanen’s instructions, I’ll wait, leaning forward with an expectant look on my face and my mouth open.  If she doesn’t respond, I’ll repeat and then offer another way to communicate her request, usually with a PECS icon or a gesture.

I’ve noticed that while she can and will say more now,  she seems a little frustrated when I prompt her for something and she thinks I know what she wants.   We’re down to  only one inside door that she can’t open, it has a child-proof (at least so far) knob attachment.   She will hand lead me to the door and put my hand on the knob.  I’ll say open several times and she gives great eye contact with an expression that seems to say yes, I want it open you idiot.   One time without thinking I said, You can say open and she said it.   I tried it with different words and it worked, not all the time but more often than without the you can say phrase.

I know that Hanen and many ST’s say that you should not say the word say to your child when trying to get them to speak, and I do agree with that.  It seems like this is slightly different.  It’s more like I’m giving her a suggestion.   Using the example of the word open, I know she can say the word in context and I know she understands the word.    Here’s my usual “script”

R puts my hand on the door knob.
Me: Ohh-pen, you want ohh-pen  (I lean over with my mouth open and an expectant look, I also remove my hand from the door knob)
R gives me the look, pushes my hand towards the knob again
Me:   Ohh-pen, ohh-pen.  You can say ohh-pen. (I repeat what I described above and wait)
R.  Ohh-pen
I’ll open the door and then say  Good talking!  You said open, I opened the door.

I’ve been careful to discuss my methods with the professionals we work with, and they all seem to say if it works go with it.   It has taken me some time, but I finally got our ABA provider to change the way they do the manding program with R.  Their method was to try to get R. to mand (ask for) the same item ten times in a row.  They would break up a cookie into ten pieces.  Usually she would do it several times and then be done with it.  I told them repeatedly that they were setting up an unnatural environment, I mean who asks for the same thing ten times in a row?   I suggested that they could contrive situations, but that they should be spaced throughout the session and take advantage of what she was interested in that day.   I gave them a clear plastic box and suggested they put different things in it to get her to mand for open.   I also told the therapists individually about exactly how I was prompting her including the waiting and expectant looks.

I know they tried and were more successful, and at our meeting last month the behaviorist said they were changing the program to record data of any manding that could be encouraged throughout the session.   It is partly that we have two really awesome therapists, but they have been getting really good results.  Especially this past week, they come running out after the session is over looking for me to tell me everything she said.  The amazing thing is that they are just as excited as I am.   Today the therapist said that R. used a verbal mand to get out of doing her work.  While on a break the therapist sang a song with R. sitting on her lap.  When she told her it was time to check the schedule, R said Sing!.

No more zombie hands

ABAs imitation programs have been really challenging for R.  At first she really did not have much of an ability to imitate at all.  In the last 6 months or so I’ve noticed that she will imitate something that is of interest to her.  If I’m doing something with one of her toys she will copy me.  The behaviorist told me that this meant she had the ability to imitate, but that it was not yet under instructional control.

When we started with the school’s ABA program, they started with the same gross motor imitation (GMI) program that the EI ABA provider used.  They said do this and clapped their hands.  When she did not clap they would take her hands and clap them for her.   R. seemed to understand that she was expected to do something and she would just hold out her hands.  She did this with the EI ABA also.  This is a result of over prompting.  The authors of The Verbal Behavior Approach call this zombie hands, and that seems so appropriate.   Our EI ABA provider did not adjust the prompt level often enough.  Of course I did not realize this until I did a bit of research and by then it was time for the preschool transition.   Our current behaviorist clearly knew what she was seeing, and instructed the therapists to delay the prompt and gradually they were able to remove it.  The behaviorist and supervisor adjusted the prompt level several times a week, they really stayed on top of it.   R. is going to master not just one but several GMI programs soon.

We saw the sun

We actually had some hot weather here this week.  It has been at least five weeks since we have seen the sun, and even then it was just a glimpse.    Monday I sent R. off to school in a long sleeve shirt and a hoodie (and pants of course), it was 53 degrees, windy, foggy and wet.  When she came home four hours later it was sunny, close to 80 degrees.  Her teacher emailed all us parents suggesting we put sun block on our children.   Only in San Francisco do parents need to be reminded about sun block.  This week was the first time I’ve needed to apply any since last summer.  The fog came back last night, but at least we are prepared for any future sun appearances.

R. has one pair of shorts, she hasn’t worn any since the last time she wore sun block.  When I put them on her she looked at me like I forgot something.  She kept trying to pull the legs of the shorts down so they would cover all of her legs.   She did get used to them after a while.

I’ll admit that I am fascinated by weather, and like BigDaddy Autism’s son I even like to watch the weather channel.    I wonder if these things run in families.  My Mother has the weather channel on all the time, and my Sister will call with local weather reports (she gets exciting weather).   I’m probably one of few people who don’t consider chatting about the weather to be small talk, and I find how people react to weather to be fascinating.

Back to school

School started on Monday.  R. got into the habit of sleeping late over the summer.  I did get her up earlier for a few days prior to school starting, but I was still anticipating a struggle.  As soon as I told her she had to get up to go to school and the bus was coming she smiled broadly and got up.

I told her all morning that Elmo could not come to school, he had to stay home.  She would not give him up for anything.  But as soon as the bus came and we were at the front door, I told her again that Elmo could not go to school and she let me take him!   Three days now and she is leaving Elmo home without a complaint.

She has been coming home from school unbelievably happy.  She’s always a happy child, but the last few days she is just super happy.  She has her ABA session as soon as she gets home, usually she has about fifteen minutes to have a quick snack and get changed.  Today the bus was late.  It was only 20 minutes, but I was starting to imagine all sorts of horrible situations.  I called and  after putting me on hold, they told me the bus would arrive in two minutes.  It did, now that is impressive.  The driver said he was having trouble with one of the student’s seat belts.  I saw this child out of his seat yesterday when I got R. off the bus.  He unbuckled his seatbelt when the bus stopped at our house.  The driver said he was going to put him in a harness, and I’ll bet that was the trouble he was having.  By the time R. arrived home the ABA therapist had been here for ten minutes.  She was not happy to have to immediately start her session and she protested quite a bit.  Luckily it is her favorite therapist and he cheered her up after a while.

Maybe it is Elmo’s world

Elmo goes to the zoo

R. has been bringing her plush Elmo everywhere, lately he is usually accompanied by The Count, but sometimes she brings only Elmo.   It is somewhat of a security item, but she is playing with it, she treats them like dolls.  Elmo gets drinks, food, his fur brushed,the occasional dress or hair bow and he gets to try on R.’s shoes.   He dances, gets talked to, shown things and put places.

A little girl approached R at the playground, admiring Elmo and wanting to hold it.  She reached for Elmo and R yelled No and pushed her hand away.   I was so surprised that I just stood there for a minute and fought the urge to jump up and down yelling Woo hoo she said no to a peer.  Then I realized that the little girl’s father was watching me so I made a lame attempt at suggesting R give the girl a turn with Elmo.  Lucky for me the girl went on to other pursuits.

It occurred to me that I really did not know the proper way to handle a situation like that.  I guess I’ve always thought that anything we brought to the playground was meant to be shared, but they are R.’s toys and Elmo is a security item, should she have to share her security item?

This came up again when we went to the zoo with another autism family who also had a child with security items.   It was kind of nice to share our glee that our kids were fighting.  We decided that the security items could only be touched by the non-owning child with permission, but the owner had to let the non-owner look at the items.  We also decided between us to let them duke it out a bit and only intervene if real kicking or crying was involved.   I only had to remove R once because she was kicking and starting to get really upset.  She settled quickly and they seemed to come to terms with each other and the temptation.

I’m trying to talk to her more about what will happen when she brings Elmo places – kids are going to look at him, want to hold him.  Maybe that will have an impact in time.

Playground perspective

I keep thinking back to last summer and how different things are now.  Even going to the playground is a totally different experience.  Last year I had to trail her at least within reaching distance to keep her from stealing toys, squashing sand castles and getting into all sorts of trouble.   Now she still wants to go to the playground in the stroller, and she uses is as a kind of home base.  Once she’s out of the stroller, she wants to do her own thing, she does not want me to follow her.  I get to sit on a bench!   She actually pushes me onto the bench to sit.  I’ll admit that I can’t help myself and I usually stand, poised and ready to pounce if necessary.

There is a table with two benches under the slides at our usual playground.  On several different occasions I’ve caught her sitting on one of the benches across from another child (usually a boy) and they are smiling at each other.  And they are really looking at each other, not the boy smiling at R and she’s smiling at the table or something.  One time the boy’s Mom came along and asked him if he had found a girlfriend.  Funny how that one comment helps blur all the nasty ones.

R. has been wanting to bring her stuffed Elmo and other Sesame Street friends with her everywhere.  I insist only two can come with us, and she runs around the playground with whichever two made the cut that day.    I think it looks kind of weird actually, but it makes her happy and she is actually playing with them.  The odd thing is that it doesn’t seem like the other kids think it is weird, it almost seems to make them respond better.  I hope I’m not in for a battle when she goes back to school.

I got E. to take R. to the playground on his own last weekend.  He’s been reluctant to do so for quite a while.  I’ve been talking up what a different experience it is, and I honestly demanded he take her for at least 20 minutes so I could run the vacuum.   They were there over an hour and they both returned in marvelous moods.

Looking for answers

I’ve been looking for a book that goes into detail about child development.   When R. had EI, the therapists spent a long time trying to get her to match pictures in a laminated version of the book Brown Bear Brown Bear.   She was never interested.   They tried several different books.  Finally they changed to a 3D matching program using toys and she was interested and did well, moving quickly on to sorting.  I asked why this was easier and they told me that 3D matching is an ability developed before 2D matching.  I won’t get into my frustration over the wasted time.  I would however like to find some resource that explains why one ability comes before another and how it is supposed to typically develop.

In February, when she had her assessment with the school department she could not (or in some cases would not) stack 6 blocks, do an insert puzzle, arrange rings in order on a post, or string beads.  Now she can do all of these tasks, and enjoys doing some of them on her own, not just for a reinforcer.   I wonder why are certain tasks part of an assessment, and what does mastery of each of them mean in terms of development?  It seems to me that after she learned to match and play with some toys appropriately her receptive language improved.  Is that a coincidence, or are they related?

I recently read the book How Children Learn by John Holt.  It is an older book and not specifically about children with special needs.  It did not actually answer my questions, but I do feel like I learned from reading it.  I’m going to use this blog to store my notes about some of the reading I’m doing.

The main point that the author illustrates throughout the book is that children learn best when they are inspired and having fun, not when actually being taught something in a structured way.   Mr. Holt writes How much people learn at any moment depends on how they feel at that moment about the task and their ability to do the task.

He does mention children with autism in one section and it is worth quoting.  ...much has been said and written about autistic children, children who seem to have withdrawn into a private world of their own, who don’t have or want any contact with the outside world at all.  Arguments rage about how best to treat them.  The conventional wisdom still seems to be that for severely autistic children not much can be done; they can perhaps be trained to take physical care of themselves and meet minimal social requirements, but not much else.  But there have been some astonishing “cures.”  Barry Kaufman in his book Son Rise, describes one that he and his wife effected with their apparently hopeless autistic little boy.  The point I want to make here is that they began their cure, and first began to establish some faint communication with their terribly withdrawn child, by making a point, for hours at a time if need be, of imitating everything that he did.  This was the door or path by which they led him or persuaded him to come back into the everyday world.

No one can ever know exactly why this cure worked.  But it feels right to me.  If I felt that the world was so unpredictable and threatening and myself so powerless that I could not risk myself in that world, but had to make a tiny, safe private world of my own, that outside world might begin to seem less unpredictable and threatening and myself more powerful if I could make things happen in it.

All children want and strive for increased mastery and control of the world around them, and all are to some degree humiliated, threatened and frightened by finding out (as they do all the time) that they don’t have it.  Perhaps autistic children need this control more and are far more frightened by not having it, and so, unlike most children, are not able to struggle patiently until they are able to get it, but instead, again unlike most children, must retreat from the big world around them into a private inner world of their own.

I think that repetitive behaviors, restricted interests and rituals can be seen as a symptom of this need for control in individuals with autism.  I also think  Mr. Holt would have liked Floortime.

The chapter on talking was interesting,  I like what he writes about infants learning to speak:

I now feel strongly that much of the time infants are not trying to imitate sounds at all, but are actually trying to speak, that is to use sounds to convey wishes, feelings and meanings.

R. has been babbling for years now.  The quality of the babbling has been evolving. Now it has all the sounds and intonations of sentences, there are sometimes words I can understand mixed in with babbling.   She will look right at me and babble with an expression that seems to say that she is waiting for a response.   I’ve thought for a long time that her babbling actually meant something to her.    Mr. Holt also writes about children learning to write who write what looks like nonsense but actually consider themselves to be writing meaningful letters or stories or whatever.  He wrote that when each of these children finally realized that no one could understand their writing they stopped and were quite upset about it.  They all did eventually end up learning to read and write properly.  I wonder how this applies to learning to speak and to a child with autism.  I think that R. realizes that we don’t understand her when she babbles.  When I do understand what she is saying she gets this expression of pure bliss at being understood.  It makes me feel bad that I don’t understand more and I wonder if this discourages her from speaking more frequently.

Mr. Holt does attempt to answer this question in regards to typically developing children:

I suspect that early infant talkers… mean to send messages with their voices, as the big people around them obviously do, and they think that these messages are being received. Suddenly, perhaps around the age of one and a half or two, it dawns on them that most of their messages are not being received at all, and that they really can’t talk like other people, but must go through a lot of trouble to learn how.  This may be one of the things that makes two year olds so touchy -they have just discovered that among all the things they don’t know how to do, they don’t know how to talk.  They are bursting with things to say, needs and feelings, and awarenesses but have no way to say them.

We assume that since words are the shortest and simplest elements of language that we learn them first. But it is far more likely that we learn words last.  First we learn the large idea of communication by speech, that all those noises that come out of people’s mouths mean something and can make things happen.  Then from the tones of people’s voices and the contexts in which they speak we get a very general idea of what they are saying,

Reference: How Children Learn by John Holt.  (Merloyd Lawrence, Delta/Seymour Lawrence New York 1982)  Pgs 43, 50, 81, 93

First week of summer vacation

Summer school ended last week and R. has five weeks off from school.  She will have ABA therapy for three weeks.  I kind of envy Moms who plan out elaborate themes and activities for each week.  While I do have some things planned, mostly we are winging it.

I feel like we are making a little progress with going to the playground and other outings.  I’ve just been bringing her in the stroller and she usually wants to get out within ten minutes or so.  She runs back to the stroller, but it seems like she is spending longer and longer outside of the stroller.  Today she spent an hour and half at the playground and I think she was in the stroller for about fifteen minutes and not in a row.

Yesterday we went to the zoo with some Moms and kids from our local Moms club.   I was quite shocked when R wanted to get out of the stroller and she ran to watch the bears with the other (typical) kids.   It seems like she is really noticing the animals now.  Which kind of gives me a clue about what is going on with her.  It seems like something has clicked in her mind and she is noticing and understanding more.  At home she is actually interested in what I’m doing – she wants to play in the sink when I’m doing dishes, join me in the bathroom.   Even when we are at the playground or when she’s at gymnastics she is actually turning to look for me.   Maybe this new awareness is giving her anxiety in some situations.