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!

January ABA team meeting

We had our monthly meeting today with the ABA team.  One of my concerns is that R. is over generalizing the mand, want book.  She is saying want book for nearly everything she wants.   The supervisor thought that this was typical for R, and she’s right. R. does have a tendency to over generalize specific mands when they are first learned.  She also said that they are working on an object identification program that will help R. increase her vocabulary, and this should help.

R. will come to me and say want book, while she hand leads me to what she wants, which is rarely a book.  If she wants a cookie, I’ll say want cookie and she will only repeat the word cookie.  I know it is common for children with autism to repeat just the last word.  I do find I can get R. to repeat two word requests when they don’t contain the word want.

We discussed this for quite a while.   They suggested that when she says want book, we should give her a book, even if we know that is not what she wants.  Then when she refuses the book we should prompt her to say the correct mand.  We decided that we should limit our use of want, okay I pushed for this, but it wasn’t hard to get them to agree.    So instead of want cookie, I’ll say eat cookie, instead of want water I’ll say drink water, instead of want open, I’ll say open door.    They modified their mand program so they will work on eat cookie, play ball and want doll.

R. has started saying Hi spontaneously, mostly to inanimate objects.    She was cold so I put a sweater on her, she looked at it and said Hi, with the most joyous, glad to see you tone.  She said Hi to the water in her shower, to the box of cookies, to the new straw I put in her cup, always with that pleased as can be tone in her voice.   The behaviorist and supervisor thought this was a little weird, but cute.  The therapists said they thought it was typical behavior for  an early talker.

They are increasing R.’s sitting on the toilet to twenty seconds, up from ten seconds this week and last.  Her pants are still on while she is sitting.  We discussed the fact that she needs to sit for the entire twenty seconds with out any prompting.  They are giving her a reinforcer after sitting, and they wondered if they should give her the reinforcer while sitting.  I said that I would like to keep reinforcing her after sitting, until we get to her sitting with her pants down.   Then when we switch to pulling her pants down, she’ll also have the addition of a reinforcer while she is sitting.  They agreed.

R. has been doing jigsaw puzzles with the image on the background, so it is really matching.  They are going to start doing the same puzzles without the background.  I’ve been doing a jigsaw puzzle with her lately with no background, and she is starting to get it.   I think she has memorized the picture, but that is okay, at least she finds it interesting.   She’s bored with her insert puzzles, so I’m looking for other activities like that.  It’s like it needs to be a little challenging, but not too easy or difficult.

They are working on a new tracing program.  R. is supposed to trace a dotted horizontal line.  She needs a little bit of a prompt but she seems to like doing this.   I know she likes to have me hold her hand and we do dot to dots or write the alphabet.  The behaviorist wants me to stop doing that until she gets further along in this program.   It bugs me a little, but I do get where she is coming from.  We’ll do more coloring.

I finally asked about being provided a list, even a short one of activities that we could do with R. on days off and sick days.  She seems to be bored and looking for more to do on those days.   They said they could give me a list of the programs that were on maintenance, and seemed to think it was a good suggestion.

One of our therapists is leaving, Friday is his last day.   It happens all the time, but it always makes me a little sad, and he says he is too.  R. really loves him, I hear them both laughing throughout their sessions.

Echolalia is kind of cool for now

R.’s talking is about the same.  We’re hearing a few more spontaneous words.  She’s saying uh oh and oh with a variety of inflections in response to things, and we’re hearing yeah and no more often.

Mostly though she is repeating what we are saying.  In a few months I may be frustrated  with this, but now I think it is quite awesome.  It means that she will say hi and bye to people if they say it first, and she’s paying attention.   I’m discovering that there are so many kinds of games to play where I get her to repeat what I’m saying.  I’ll give her stuffed animals one by one, getting her to repeat duck or whatever.  We’re actually playing with flash cards.

E. is much sillier with her and they play these games echoing babble phrases.  He touches his forehead to hers and says “bonk” and she says bonk and they play a head bopping game.  I’ve been trying to put a stop to this game, imagining her head butting one of her class mates.   But I think I end up sounding like a control freak because they are having fun.

Right before Christmas vacation the behaviorist said she was not doing as well with two word mands, they are working on want book, want ball.   She suggested I work on it over vacation.  I did and did not have much luck with any mand that started with want, she would just repeat the last word.  She would however repeat two words for requests like lights on, socks off and that kind of thing.  I also noticed that over vacation her response seemed to be a little slower, I had to work a little harder at prompting.   I was wondering if I was seeing a regression.  Monday when she came home from school she was back to responding to a verbal prompt almost instantly and it has been that way all week.   I can’t help but wonder if this is a part of having vacations or if we could be doing something else.

She also has new sounds.  Her screaming has become more dramatic.  She has this new angry, tearless scream that is so loud and high pitched, it must get the attention of all the dogs in our neighborhood.   No one told me that her voice could get louder.   She also has a new happy sound, I guess it is really a vocal stim.  She sounds like Arnold Horshack’s little sister.   She makes this sound and runs around grinning and being mischievous.

Encouraging Communication – What’s working Part 2

Play skills are directly related to communication abilities.

One of the first things that our first ST told me was that developing play skills is crucial for early communication.   I would like to understand the hows and whys better, but I have seen that as R.’s play skills increase so does her ability to communicate.
In the beginning I felt like I should always be working on something with her.  I’d talk to her constantly, follow her around reading books, doing all kinds of things that did not hold her interest.   One afternoon I just started with what she would like to do – I chased her, and she loved it, she engaged with me and was smiling and laughing.  I realized that although it did not seem to have anything to do with encouraging her to talk, our play was a step in the right direction.

R. like many children on the spectrum only engaged in exploratory play.  She would shake, hit, throw, mouth and examine toys.  Sometimes she would line them up.  I hosted a playgroup for a typical Mom’s group before R. turned two.  I did not know about the autism yet, but I knew R. did not play like other kids.  A baby who wasn’t even walking yet crawled over to the toy box, found a car and proceeded to drive it across the carpet.   His older sister put a doll in a play stroller, flung a play purse over her arm and said she was going out.  R. spent most of the time rolling around under the dining room table.

It is hard to figure out how to play with someone who doesn’t seem to want to play with you. When that person is your child, it can be even harder.  I had to realize that any kind of interaction was the goal, and any activity that she found enjoyable was worth pursuing.  I did not need to worry about if the activity was educational or appropriate or anything else.

Activities that require me or another adult’s participation were (and are) the easiest to engage R.   We still play “baby games” like peek-a-boo, chasing, tickles and raspberries.  In the beginning one of the few sure fire ways to engage her  was to let her knock over a tower of blocks that I stacked, she would do this over and over.   Bubbles, wind up toys, even a whoopie cushion all got her attention and made her want more of the activity.  The ABA therapists are really good at coming up with their own silly games.

A couple of silly games we are playing now- R. will lead me to a computer chair with wheels , I’ll prompt her to say come, and when she wants me to sit, I’ll verbally prompt her to say sit.  She will then climb in my lap, say ready, set go and then I have to give her a chair ride.   A variation of this is that she will lead me up the stairs, I’ll prompt her to say come and then up.  She then pulls me to sit down on the top step, and I’ll prompt sit.   She’ll climb in my lap and say down- again she wants a ride.  I’ll make her say down for every step.   With games like this that are consistent, she seems to be able to say a spontaneous word for the start of a desired activity  (ABA calls this manding) more consistently.  So she will say ready set go, or down with no prompt most of the time, but the lead in words -come, sit, still require verbal prompting the majority of the time.

I keep some toys out of reach, and some are in boxes or bags that she can’t always open, so she has to ask for them.  During EI, R. had a program that was just the therapists demonstrating different things to do with toys and taking data on her interest level and attention span.   I try to come up with interesting and different things to do with her toys, so she will ask me to repeat the activity.

Floortime talks about joining in a child’s play, and this is a good way to engage R. when she is perseverating or just on her own agenda.  When we started, one of her favorite activities was to carry all of something, like blocks or stuffed animals one or two at a time from one side of the house to another.  I would get in the way and hand her the animal or whatever, and just insert myself into her game.  I would also mess up her pile, which sometimes annoyed her, but hey I got her attention.

I think the reason that children on the spectrum are limited in their play is because they literally have difficulties imagining anything else to do.   It seems to me that the repetitive nature of her play was (and is) comforting to her.   Most people have an easier time in most situations if they have some idea about what is going to happen.  Perhaps for R. it is that she can not even conceive of a unique situation until she has seen it, and often she might need to see it several times.   If I pick up R. in the kitchen and run or spin her or do something fun, she will hand lead me back to the exact same spot to repeat the activity.  It doesn’t occur to her that I could do this anywhere, until I show her.

Thinking about pretend/symbolic play it makes sense that children on the spectrum would have difficulties in this area.  Why is symbolic play so significant?  I wondered this after our diagnosis, and I’m probably not the only one.   Symbolic play is essentially how she is perceiving and reenacting her experiences.   I think that when R. did not have any symbolic play skills, she also did not have much knowledge about or ability to manipulate her environment.   As R.’s symbolic play increases so does her expressive and receptive language abilities.  I think in the wait for spoken words, I kind of forget about receptive language.  It is so amazing to get responses to things I say, that tells me that not only is she understanding me, she can imagine and conceive of a familiar situation she is not experiencing at that moment.

As an example, We went to Home Depot recently, and as soon as we pulled into the parking lot R. started to cry.  It was clear she did not want to go.  A year ago she would not have even noticed where we were until we were in the store.  She could see the store and imagine (I’m guessing here) the last time we went.  She did not cry the last time, but we had been there the day before, so I’m sure she was tired of it.  I told her that Daddy would go to Home Depot and she and I would go get a cookie at the bakery.  I repeated this a few times and she stopped crying and she even said cookie a couple of times as she climbed into the stroller.

I think it has been the most difficult to encourage pretend play as opposed to other kinds of play.  Probably because I have a tendency to over think it.   R. really liked to set up toys on the dining room table, so it seems like a natural thing to encourage her to set the table with play dishes and food and have her dolls eat and drink.  She will set the table, feed and give drinks to her dolls (mostly Elmo and company).   She will try hats on Elmo or Ernie and she is starting to try out things that aren’t actually hats.  This is a great improvement over a year ago when this kind of play was non-existent.  But her symbolic play skills are still very much in the beginning stages.    She’ll brush Ernie’s hair for a few minutes and then go on to something else.  I’m not seeing many complex scenes acted out.  It is not always easy to interpret what she means by what she is doing.  When we are out she’ll have Elmo and Ernie try out things, she’ll dangle them over the side of the shopping cart and she will be babbling in a conversational tone the entire time.

I set up different play scenarios and I try to mix up the locations and how they are set up, so she doesn’t become too fixed on one way.   I also try to jump in and make her play sessions a little longer.  She will put a doll to sleep and I’ll pick her up and make her tell R. that she doesn’t want to go to sleep.  Or when she removes the doll’s clothes I’ll have the doll complain that she is cold.  R. is becoming very receptive to me playing like this.  She smiles and is very engaged and will give me items to use to play.

Encouraging Communication-What’s working Part 1

Find an alternative communication method.
We used PECS (Picture Exchange Communication System) with R.  We were fortunate that our ABA provider made all the icons and set up the binders.  We used a combination of the standard icons and actual photographs.  We started hand over hand and offered preferred items.    In the beginning the therapists would put her trampoline against the wall and she would have to hand over the icon for the trampoline to get them to put it down so she could play with it.   We keep two PECS books around the house,  one for food and the other for activities.  R. does not use them as much as she used to, I think she really understands it is easier to be prompted to say the word than retrieve the icon, but she will occasionally go back to them and bring us one of the cards.

Sign language is another option.  R. did not have the imitation skills when we began, so this really was not a good fit for us.  I have met other children with ASD who are as adept with signing as R. is with PECS.  One advantage to signing is that you don’t have to bring your PECS book everywhere and keep track of all of those icons.

Our former program director would talk about PECS enabling R. to learn the power of communication. It really is not possible to physically prompt a child to speak, but both of these methods can be physically prompted.  The advantage of being able to physically prompt the correct response, in ABA speak is errorless learning.  The prompt level will be gradually decreased.  When R. started using PECS the prompt was to hand over hand help her remove the icon and hand it over.   After a while the only prompt she needed was for us to show her the PECS book.

Several family members asked me if R.’s using PECS was going to delay her ability to speak.  They were concerned that it appeared easy for her, and she would become reliant upon the method.  I think PECS is what enabled R. to get to the point she is now with speaking.   She was not at the developmental point to be able to access language, but she was able to be taught how to communicate.  NT infants and toddlers in the pre-verbal stage are becoming experts at non-verbal communication,  R. needed to develop these skills before she could speak.  PECS enabled her to have the benefit of being able to communicate at her developmental level.

The ipad and other devices will be opening up new worlds in alternative communication for children on the spectrum.

Don’t reward crying/tantrums

Crying and tantrums are a form of communication.   They were R.’s main method when we started on this journey.  ABA was very helpful in teaching me that I should not give her what she wants when she cries, I should prompt her to communicate her wants.  I wrote about this a few months ago. I’ve read discussions on different ASD boards that describe this method as not acknowledging or ignoring crying/tantrums, and I think this is an incorrect interpretation.   Crying should be acknowledged for what it is, a complaint.  The message I want to send R. is that, I hear you, you are upset, but if you want whatever it is you have to say a word or give me an icon.  Crying may get my attention, but only communication is going to get you what you want.
At this point I can usually prompt R. to say a word if she is crying for something she wants.  This actually happens rarely, because most of the time she will start with a gestural communication (hand leading) and then will either say or be prompted to say what she wants.  But sometimes she can’t have what she wants, or she has to wait and then she will cry.  This is probably more accurately described as a complaint, she usually has no tears and there is babble and sometimes words among the yells.  I also try to explain why she can’t have what she wants and offer an alternative.  So if she’s crying because she’s impatient for the popcorn to finish in the microwave, I can show her the bag that is popping, the countdown timer and say we have to wait.   It’s always harder if it is something she can’t have, but it is getting so much better.  So if she is crying because she wants to go outside, I can tell her it is too late to go out and offer something else to do.  I’m still in awe every time this works.

Consider that communication is more than just words.
Shortly after we started ABA, R. began hand leading.  I realize now this is quite common among children with ASD.  At the time it seemed quite amazing, and now it is so much a part of how she communicates.  Prior to any gestural communication it seemed her only method of communicating was by crying or with a look or expression .   The first programs that ABA started with were what they called anticipation games.  They would do something she liked – tickles, spins, bubbles… and then wait for her to look at them to repeat it.    It wasn’t long before she would gesture by grabbing their hand to continue the activity.     These play activities taught R. that people could do fun things if she communicated.

In the book The Special Needs Child by Dr. Stanley Greenspan, he writes about closing circles of communication.   If I tickle her and she looked at me to continue, that would be one circle of communication.  I really liked this concept because it gave me a sense of actually doing something using skills she already had.    It still feels like a game to see if I can get her to close just another circle or two.   Floortime lite Mama writes about Floortime as a lifestyle, and that is how we do things around here.

Words, words, words

R. is talking more and more.  Most of it is still prompted, but she is saying more spontaneously.   Open is still her default request word, but it is being replaced with other words.   Last week she was saying Do this when she would hand lead me to something she wanted.   And as further proof that ABA is rubbing off on her, she said do this and made Elmo jump and then Ernie jumped in imitation.   This week she is saying want most often.

Sometimes she will really surprise me and answer a question.  She was crying and obviously looking for a particular toy, I helped her go through all her stuffed animals and I kept asking her what she wanted.  Finally she yelled Ernie.     I found him under a book, mystery and crisis averted!

It is still most frustrating when I don’t know what she wants.  She was clearly angry about something, she cried and then yelled you, you, you, you, you and looked me right in the eyes with an angry expression.

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!.

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

What does she ask for?

We have a substitute for our regular ABA supervisor this summer. She asked me to make a list of the most common things that R. asks for by hand leading or using PECS.

I’ve been asking them to help us work on getting more verbal requests. After months of filling in ready set go and one, two three. she is now using these phrases like they mean more or do it. She loves it when I spin this fit ball disk on her trampoline. She’ll lead me over to it and say one, two three. They suggested that we only use those phrases as part of a game and prompt a specific word for each activity. They also said that we should be consistent in using the same words over again.

It is good advice and sounds simple enough. I find that I don’t always know if I’m emphasizing the correct words, or if I am being somehow confusing. Our previous ABA provider did not like to use the word more. They believed that teaching specific labels would lead to better language use in the long run. I can see how there might be some merit to that, but at this point words like more, open, and on would be very useful.

Most common PECS used (non food items)
Music (CD player)
Nesting Monkeys (Can say monkey, but rarely does)
Monkeys in a barrel
Bubbles (can say bubbles, but usually uses PECS)
Letter puzzle
Magnetic letters

Activities that she mands for often by hand leading and putting object in our hands or trying to put our hands on the object :
Join her to play with blocks
Spin disk on trampoline
Play ball (can say Ball)
Race cars (matchbox)
Dress Elmo, Ernie or Dolls (can say Elmo, dress, shoe)
Lay down on bed (occasionally says sit down!)
Lay down and snore (makes snoring sound)
Turn on fan, keyboard, TV
Play keyboard
Open – door, box or bag with toys (just starting to say open)
Write on magnadoodle
Play ring around the rosie (can say ring rosie, but usually indicates with hand leading)
Feed fish