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