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.

What ever it takes

We are in the beginning stages of potty training, it is like we are in the training for potty training stage.    Starting in November, we spent several weeks just taking R. into the bathroom at the end of her daily ABA session.

The supervisor decided that the next step was to get R. to lift the lid of the toilet seat.  She wrote the program so that R. was supposed to open and close the toilet seat lid ten times in a row.   I stepped in immediately and said no way are you having her do that ten times in a row.  I mean talk about teaching a repetitive behavior.   It did not take too long for R. to master lifting the toilet seat lid once.

Sitting on the toilet is a problem for R., she does not want to do it at all.   If I want to get her out of the bathroom all I have to do is suggest she have a seat on the potty. (Maybe I should stop doing that).   The supervisor’s suggestion for the next step, is to have me sit on the toilet and put her on my lap for 30 seconds.    I did mention that this happens during R.’s ABA session.

So yesterday here I am in the bathroom sitting on the toilet with R in my lap, her male therapist watching and counting.   Counting out loud to 30 was the only way to get her to stop screaming and fighting.   To his credit, the therapist did not seem the least bit embarrassed or flustered.     I’m just going to have to get over it.

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.

Week of meetings

Tuesday we had an addendum IEP meeting to continue R’s ABA services.   When she had her initial evaluation with the SDs ABA provider they were not happy with our former provider’s programming, data taking and they felt that R. could have made more progress if the program direction was better.   So for her initial IEP they approved six months with a provision to review.

They approved continuation of the ABA, which I thought they would, but you never know.  They also took some time to add in additional goals.   The teacher asked for a behavior plan for when R is chewing on books (more of a problem lately).  She said that she had been taking away the book and offering a chewy toy, but she felt that we should be modeling appropriate behavior with the book instead of taking it away.   The ABA supervisor set up a behavior plan that says, when she chews on a book to stop her, get her to spit out anything in her mouth (she actually cooperates with this, she knows she should not chew on a book)  and then get her to look at the book properly, once she does this give her a chewy toy.   I guess this means that I’ll actually have to buy some of those chewy toys.

I asked about self-help skills, and they added IEP goals for removing her jacket, independent hand washing, and nose blowing.  They also added goals for drinking from a straw and an open cup.  She uses a straw cup with a soft straw all the time, but she won’t drink from a regular hard straw or even a juice box.  I know she knows how to drink from an open cup but she thinks it is more fun to dump it.

We discussed potty training, it is on her IEP.  I know she is not ready yet, but I was looking for advice regarding the first goal which is R. letting us know when she needs a diaper change.   The teacher suggested having R. wear underwear underneath her diaper to see if she would try to take it off or let us know when she’s wet.   I’m going to have to find Elmo underwear.

We also had our monthly ABA team meeting this week.  We used to have the meeting at the school, but now we have it at their offices (they are part of the SD, in one of the administrative buildings).  R. actually really likes going, they have fun toys and she seems to find it amusing to have us all sitting in one room.

The behaviorist said that based on her observations that R. had decent play skills.  She had decided not to add any additional play skill programs.  But the teacher said that R. is not showing any of these play skills at school, even though they have similar toys.  So  the behaviorist is adding a symbolic play program using Little People that she has at home and school in hopes that she will begin to generalize.

We discussed the other additions to the IEP and went over the programs.    They had a jack in the box among the toys in the room and R. was very interested.  I don’t think she has ever seen one before.  She did not like the music it played and would turn the crank and then cover her ears.  After awhile she figured out how to open the top without using the crank.  The behaviorist asked if we wanted them to address her putting her fingers in her ears.  I said that I did not.  It is something new that she is doing, so it could be a phase.  And I think that if she is bothered by sounds, putting her fingers in her ears is a great improvement over screaming or crying.

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.

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.

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