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.

Christmas vacation is over

The bus came five minutes early this morning.  That was right on time as far as I was concerned.  R. seemed just as happy to go as I was.   I think she had a good vacation.  We had some minor meltdowns, and she’s been a little stimmy, but generally in a good mood.

We had a chance to go to a tot gym that we used to go to regularly.   She remembered as soon as we got into the parking lot and held my hand and ran into the place.   I think we probably hovered a little too closely, she did not get into much trouble at all.  She used to just run around all excited and crash into kids.  She did not crash into one person, and I even saw her stop herself so she wouldn’t knock into another child.   She spent some time following these two little girls, I’m guessing were close to her age.  They were playing with those sticks with horse heads on them, I can’t think of what they are called.  She finally worked up the courage to grab one, and as I was about to intercept one of the girls handed her one.  They had an extra.  Of course she did not know what to do with it.  But that scene could have ended with a meltdown and two girls getting bopped on the head.

She also spent quite a while in the bouncy house.  A few small boys were in there.  One of them kept knocking all the other kids over, R. included.  She thought this was hilarious, and let him knock her over many times.  She also let a small boy, probably under two crawl all over her.   Part of me kind of hates those bouncy houses.  I never know what is going to happen, and it’s not easy to go in there after her.   She really likes them, and she’s starting to learn to get out of the way so it is easier.

I got my fill of bouncy houses, we also went to a party playhouse which is basically a giant bouncy house with several levels,  slides and ball pits.   She played for a while, but then wanted a drink and had a meltdown when she could not bring her cup into the play area.  She let me put her shoes on and was fine once we got to the car.  It was getting really crowded, so I’m sure she was overstimulated.

Conquering the library

About a year and a half ago we were at a playground with one of R.’s ABA therapists during EI.  There was a library having a story time in one of the rec rooms and R. was fascinated by the singing.  She went in and only wanted to run loops around the room.   The librarian told me that if she could not sit, we had to leave.  I attempted to hold her in my lap and of course she screamed.  The librarian told us to leave.

I’ve had this irrational fear of bringing R. to the library ever since.  When she started school last March I was able to start going to the library regularly by myself.   Over the summer I started by putting her in the stroller and just walking into the library to drop off books and then leaving.  I gradually increased the time, and now I can usually take her to the library for 10-20 minutes and actually spend a little time choosing books or DVDs and then check them out.

During Christmas vacation we have been able to actually use the library as an outing.  She is happy to be wheeled around the library and then will play with the toys.  I’ve had a little problem with her screaming about books, so I’ve been careful to only let her look at one at a time, and if she screams we leave instantly.

One day we showed up at the library and story time was already in progress.   She seemed interested and happy in the stroller so we stayed.  She sat through the remainder of story time- about half an hour.  She did have her fingers in her ears the entire time, but she did not complain at all.  The rest of the day she sang Old McDonald, one of the songs they sang.

The main city library was advertising a special Christmas train display in the children’s area.  They have a very nice and large children’s area, and we’ve been talking about taking R, so we went.    There were three trains on separate tracks, Thomas the Train, the Polar Express train and the Hogwarts train.  They were in an enclosed case and there were buttons on the front to control each train.   I have to admit I was bored in about two minutes, but E. and R. spent fifteen minutes watching and pushing the buttons.   We took her to the children’s area and she actually asked to get out of the stroller.   The play area was nearly empty and she played for quite a while.   We walked around another floor of the library and R. sang read read read over and over again.  That is from the Pirates who love to read song on the Elmo and the Bookaneers DVD.

Happy New Year

I’ve been thinking back on the past year.  2010 was long and eventful.  It’s funny how things seem so different and yet also the same.  I was looking through pictures and I found two that really illustrate this for me.

Jumping at Home - Jan. 2010

Jumping at School - Oct. 2010

Another Christmas gone by

We made it through Christmas 2010.    R. doesn’t really understand the concept of wrapped presents.   I ended up opening most of them, she kept going back to the toys she already opened.  But she definitely enjoyed getting a stash of new toys, she was giggling and saying yay a lot.   She also collected everything on the dining room table, like she needed to take inventory and guard it from being taken.

She really loves these Caring Corners furniture sets.   I see a doll house in our future.   I’m really impressed with these sets, one came with a doll (Mom I guess), a bed with an attached blanket, a nightstand with a working lamp (she loves this) a cat, a stool and a book.  The doll can hold the book if it is sitting, and once I did this, R must have asked me to do it 100 more times over the last day.  The other set has a doll (the daughter), present, pinata and a table with a birthday cake on one side and you can flip it over and there’s pizza on the other side.  Each side has two little triangular pieces of cake or pizza that can snap onto the plates on the table or into the pizza or cake itself.  R. was kind of frustrated at first that these pieces did not come off completely.  But now she is used to it and seems to like to fit the slices in like a puzzle.

Ernie tries the new cake table

She also likes the Fisher Price Flip Flop Egg Drop toy.  I have to thank Shannon De Rosa for the suggestion.    R. hasn’t figured it all out yet, but she is captivated.  It is a little tricky.  You have to line the egg up with the hole for each egg, and there are three levels one has a wheel, one a push and pull lever and one turns.  You can flip it over and do it again.   At the top there is a chicken (or a duck?) that comes out when you turn a wheel.  I think this will be around our house for years.  It is good for fine motor skills, problem solving and it is kind of stimmy watching and listening to those eggs.

This wasn’t exactly a Christmas present, but I bought a small plastic cabinet with three drawers.   R. has been really into opening drawers lately, and she has a growing assortment of play food and dishes.  So I filled the drawers with the food related items and she just loves it.

I’m Stylish?

Kathleen at Kicking Kittens gave me this award.  It’s hard to imagine being stylish, so I’ll have to assume it is referring to the font I chose.  Thank you Kathleen, this is my blog’s first award.

I’m supposed to list seven things about myself, so here goes.

I like to watch Science Fiction shows and movies.  I still like to read, but I don’t as much as I used to.  I miss Battlestar Galactica and Lost.   I’ll even watch those disaster movies on SyFy.  You know the ones where the main character is a scientist who discovers the impending disaster and then manages to lose his child on the other size of a giant chasm or lava flow.  I usually start talking to the main character about half way through and telling him he better not solve everything with a nuclear bomb.  Most of the time he does and I’m kind of annoyed about it.  I do wish they would make a movie of the story When Sys Admins Ruled the Earth.

Years ago, before getting married and having a child, I played bass in a metal band.  Back in the 80’s I had big hair and clothes that don’t need describing.  But most of my band years were in a thrash metal band.  I don’t miss dealing with band members or any of that, but lately I miss playing.

I’m really bothered by one line in If You are Happy if You Know It.  It is the one – If you are happy and you know it stomp your feet.  Who stomps their feet when they are happy?  It seemed like every therapist during EI sang this song.  Now maybe it is just me, but I spend a lot of time telling my daughter things like when you are angry you can…  And this song is just confusing the issue.   Where do I write to complain?

We have a cat who is 19 and senile.   As soon as R goes to school in the morning or to bed at night, the cat is right there looking for attention.  I’m not sure the cat really understands that R. is a person.   Although this week I caught the cat meowing at R. for the first time.  R. said Hi to her, which was more pleasing to me than the cat.

I really hate weeding.  Here the weeds grow all year long.  So over the last couple of years we’ve been changing all the plants to succulents and putting in rocks.   It is really helping with the weed situation, and we hardly have to water at all.  My favorite succulent is the Aeonium.  They are so pretty and interesting to watch grow.

I started volunteering at our local Support for SN families office.  I’m just answering the phones and doing whatever admin work they throw my way.  I’m also training to become one of their Parent Mentors.    The classes are really amazing – it is a combination of special ed law and all of the individual experiences of the parents involved.   I’ve learned so much already.

I think I’m the only person on the planet who doesn’t like wine.  It tastes like rotten juice to me, and I don’t like juice either.

I get to choose three blogs to pass this award on to.  It is hard to decide, kind of like picking three chocolates out of a box.

Anybody Want a Peanut

Professor Mother Blog

Wildeman’s Words

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.

Visiting the Wax Museum

We got free passes to the Wax Museum at the library this week, so we took R. today.  We have taken her to Fisherman’s Wharf before, and as long as she’s in the stroller she seems to like it.

We went early enough it was not crowded, we had the place to ourself for the most part.       I’ve been to the Wax Museum before, and if you are visiting San Francisco, I’d say it is not worth the admission price.   The statues are not very authentic looking.  We went to Madame Tussaud’s wax museum in Las Vegas years ago before having a child and those statues were truly life like.

There wasn’t really anything that held R’s interest for long, but she seemed to like looking at the different displays.  It is mostly historical, religious and sports figures and entertainers.  The Wizard of Oz was the only thing that was child oriented, but she doesn’t know anything about Dorothy or and of that story.

She kept her fingers in her ears the whole time, it was a little loud in there.  But she did not cry or complain, and she was in a wonderful mood afterwards (usually a good indication of a successful outing).

Say what?

Sometimes I can’t believe what I’m hearing coming out of R.’s mouth. She will occasionally say I know, in an annoyed tone, usually when I am indeed telling her something she knows. Yesterday morning she said sweet several times on her way out to the bus.

She’s also saying things I don’t quite get. A common phrase sounds like she is saying suck a duck. Only the last word is not actually duck if you get my drift. E. swears that he never uttered THAT phrase to her, so I’m going on the assumption that I’m clearly misunderstanding her.

Another one I hear fairly often sounds like Chigada chigada megadeth megadeth. Now I do like Megadeth, the first few CD’s anyway. But I’m sure I haven’t discussed the band with her. Again, another mystery phrase.

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.