Two tours down

So far we have visited two classrooms.  AutismMommyTherapist was right, I’m starting to get a better idea about what I’m looking for and also what it is I am seeing.

It is like there is one voice in my head telling me that I need to keep things as similar as possible to what she is doing now and there is this other voice telling me that this is kindergarten and it should be different.

In the chapter What Can We Expect?  From the book The Child with Special Needs by Dr. Stanley Greenspan and Serena Wieder, they write:

The best indicator of your child’s potential is the shape of his learning curve once he is in an optimal therapy program.  …. as long as that learning curve is going up your child will continue to grow…

If you think of your child’s learning as the building of a skyscraper, you can picture the emotional milestones as the building’s foundation.  They must support 80 stories – 80 years of living in the world.  They must be very strong, for if those basic skills are shaky, the entire building will be at risk.  It is far better to have a solid foundation developed late, than a shaky foundation built on schedule.

Quality of learning should never be sacrificed to the desire to move ahead.  If building a solid foundation and strengthening the milestones means temporarily taking more time, we encourage that, because without that foundation your child will never be able competently to move on to more complex areas.

Both of the voices in my head have a point.  We do need to find a class that will provide a similar environment to what she is used to, but at the same time offering new opportunities for learning and experiences.

By the end of the month we will have visited 3 SI (Severely Impaired) and 3 MM (Mild Moderate) special day classrooms.  Between the two categories there are more than twenty schools in the city.  There just is not enough time before our placement IEP to see all of them.  I think that we will have enough information to make a decision on service type.

In speaking to the teachers it seems that each one has an idea of what type of student belongs in their class.  It would be nice if they printed a directory of that information, but technically I believe that is against the law.  Special education is a service, not a place.

The teacher of the MM class we saw told us that she felt a couple of her students were misplaced in her classroom.  I feel badly for those children and their parents.

I’m not going to be able to change that before R. gets to kindergarten so I will try to use it to my advantage.  The teachers seem willing to speak to R.’s teacher and one offered to have R. come and sit in on a class.  I don’t know how that would work out considering it is a different school, but it is something to think about.

Reference: The Child with Special Needs by Stanley Greenspan, MD and Serena Wieder, Phd (Perseus Publishing, 1998)  Pgs. 433, 436,

Looking to youtube for inspiration

R. really likes to watch videos on youtube on the ipad.   She can pick videos from her history, the favorites or subscriptions. (I subscribed to Sesame Street.)  She also seems to remember how to find particular videos by looking at the choices that come up when a video is chosen.  It looks like she is just watching a video for a second and then going on to another one, but it usually means she is looking for something.

When she started summer school at a different school she kept watching this video about riding the bus 40 blocks from home.   When we started potty training she was finding all these Elmo potty videos.  She does tend to like to watch a video over and over, not for an hour, but five or six times.

I’ve been trying to see how I can work with her interest in these videos.  The obvious way is to sing the songs.  She does like this, and will sing along and request that I sing them now.  She also likes it when I change the words and add her name.  She never seemed to notice before.

R. likes counting videos, for a while she was watching ones with Count and his counting organ.   I started using her Count doll to count things and this is now a regular game.  Mostly she wants me to count the pieces of her play birthday cake.  I have to hold up the Count doll and have him count and touch each piece, and I can’t forget the ah ah ah at the end either.   She is starting to do it herself, so we can take turns.

Another video she watches often is an old Sesame Street cartoon – Number 9 martian cutie.   The artwork is simple enough I actually managed to draw it and boy was R. impressed.    She asks me to draw it over and over.  I will only draw one part at a time, she has to tell me to continue.  She usually taps me and then I prompt the word. Since the martian has nine hairs, eyes and other parts we are closing dozens of circles every time I draw one.  She also likes it when I hold her hand and draw it with her.   I’ve been backing off and getting her to at least draw the hair and arms (just lines) with just a prompt at her elbow.  She is so proud of herself.

If that crafting gene I’ve been waiting for all my life ever kicks in, maybe I can think of some way to make the martian in 3D with glue and stuff.

Her favorite dvd right now is Elmo’s Christmas Countdown.  She’s been watching this video from that dvd of two actors from the Soprano’s playing Bert and Ernie.   I tried acting out the videos with her Bert and Ernie dolls, but she was a little too entertained by sticking things in my ear.  I don’t think I should encourage that.

I found a stuffed gingerbread man and woman a relative gave her a while back, so I’ve been playing you’ve got a gingerbread man on your (or my) head.  It is usually good for some laughs, but it doesn’t keep her engaged as long as drawing martians.

I think her favorite part is when they yell gingerbread man, because I hear her saying that and she loves it when I say it.    I dug out some Christmas books and we look through them and yell gingerbread man when we find one.   I also printed out gingerbread men from the web and placed them around the house.  She doesn’t quite get the idea of hunting for them, but she enjoys finding them and yelling gingerbread man with me.   I should try drawing them with her, but I think I’d need a stencil or something.

Any easy crafty suggestions are welcome.

Words, they are coming

R. is having her first real language explosion.  This is the first time in her whole life I feel like I can’t quite keep track of all the new things she is saying.   Her language is still a far cry from a typical four year old, but for us it is amazing and wonderful.

Mostly she is speaking in 1-2 words requesting (manding) things.  She will spontaneously say what she wants, and if we don’t respond right away she will repeat herself over and over again, and then point at the item and give me a determined look.  She is doing a lot less hand leading, it is like she realized she can get us to do what she wants with her other methods.

It is so interesting to me, I’ve been working for years now on increasing the exchanges (circles of communication) between R. and I.   For so long it was mostly gestures and facial expressions that we were exchanging, I guess I thought that when talking was the main method of communicating, it would decrease the number of circles of communication- because talking is so much more efficient, and R. is not able to really converse yet.   But I’m finding that while it is certainly more efficient to have R. talk to me, we are actually closing way more circles of communication during our exchanges.  She looks at me to see if I am paying attention when she speaks, she keeps looking back at me to see if I respond.

She is also doing a lot more labeling, she hardly did that at all before.  It seems like anytime she sees something she recognizes she labels it and seems so pleased with herself.   We were at the playground and some adults were riding bikes just outside the fence.  She said bicycle, bicycle clear as could be and ran to follow them.

R. does not seem to have the same problems with over generalizing that she did a few months ago.  I think the behaviorist was correct to say that increasing R.’s receptive language would help her generalizing abilities.   Sometimes she comes up with the wrong word for something, but it is different, I can usually get her to say the right word with repetition.  But I do have to figure out what she means first.  She was asking for peacock, so I showed her pictures.   Later, I gave her some peas to eat (she likes to eat them frozen out of the bag) and she got all excited saying peacock peacock.   I only had to model the word pea a few times until she started asking for pea instead of peacock.  I also don’t think she exactly understand what it means when someone says ow.  She bopped me on the head with a toy, and then rubbed my head and said ow R.

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.

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

Wonderful, wonderful trampoline

We were lucky that our former speech therapist found a trampoline on her street. None of her other families needed it so she gave it to us. It really helped during her long days of in home therapy. She had an outlet for her energy and the jumping helps to regulate her senses. I never thought about all the different ways that a trampoline could be used until one became part of our household.

Of course she can jump on a trampoline. She can jump barefoot, wearing shoes and socks, or just socks or even fuzzy socks. She can land on her feet, crash onto her knees or bottom. She’s not ready for hopping or fancy footwork, but sometimes I’ll catch her leaving toys on the trampoline and jumping around them. Sometimes she likes it if we hold her hands while she jumps -she gets even stronger stimulation. I will put a fuzzy body pillow on the trampoline and she will crash onto it. She came up with the idea of piling up all her stuffed animals on it and then crashing and rolling.

The therapists always called this game popcorn. We will place small toys on the trampoline and bounce them from underneath. She loves this, especially when the pieces go high and fly off onto the floor. She will collect them all and set them up in the middle of the trampoline, even standing them up if it is possible. We have used rubber ducks, small plastic animals, little people, letters, legos, pegs – almost anything will work. I always say ready set or one, two and she will fill in go or three. She’s starting to say all three words when she wants me to do it again.

When we were first teaching R. to use PECS, we would put the trampoline up against the wall and leave the trampoline icon where she could reach it. She really wanted to play on it so this worked really well.

We also use the trampoline as a table/platform. She will set up her dishes and cups on the trampoline although lately she prefers the dining room table. She will bring toys and sit on the trampoline on her own to play. It is also a great place to bounce balls and test the bounce-ability of objects. We also roll balls, spin tops and send cars racing across it.

The evolution of fake snoring

Some relatives were visiting over Christmas last year and they have kids near R.’s age.  I can’t even remember the context, but the older boy pretended to sleep, complete with fake snoring a couple of times.   After they were gone R. started doing it!  She would lie down on the floor and snore and kind of grin.   She did it once in a while, but it wasn’t predictable and I couldn’t get her to do it by playing with her dolls or stuffed animals.

One day I told her I was very tired and faked a dramatic stretch and yawn, and abruptly “fell asleep”, snoring loudly with my head on her shoulder.  Of course she pushed me away and I sat up dramatically saying Ooooh you woke me up.  After just a couple of times she started pulling my head down to do it again.    This became a regular game to play.  Shortly after we started playing the game, we were shopping in Target.  R. is happily sitting in the cart and she starts making snoring sounds.  I’ll admit, I kind of ignored her, wanting to finish shopping.  She persisted in snoring and started pulling my head down.  So there I was taking a “nap” while walking through the store.

Lately I’ve been seeing her incorporating the snoring into different but similar games.  She acts out the game with her stuffed animals.  She puts her dolls to “sleep” on a blanket and invites me to come and sleep, really she wants me to snore.  But we can play the snoring game and then I can wake up each of the dolls and she’ll put them back to sleep.  She will snore when she lies down on the floor, and sometimes it means she is genuinely tired and other times she wants me to “wake her up” .