Dec222010

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

Dec162010

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.

Dec112010

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).

Dec072010

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.

Nov292010

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.

Nov242010

Happy Thanksgiving

Nov212010

What a difference a day makes

Wednesday’s note from Teacher- R. had a difficult day.  She fixated on two puppets a duck and an alligator.

Thursday’s note-   R. imitated the gen ed kids (read neuro-typical) at recess, running, laughing and stopping and going.  Took the class to the market on our walk and bought tomatoes and potatoes.

Nov142010

What a mess

It is weird, R. has been playing more appropriately,but she has also been  taking all her toys out and making what looks to me like a big mess.

Building Mount Stuffie

I don’t mind the stuffed animals tossed around, or piled up, but her throwing everything else into a big pile makes me crazy.   I don’t know why. I find myself either following her around compulsively cleaning up after her or totally ignoring it until the ABA therapists show up or the end of the day.

She's not distressed by the mess

Seeing the books thrown around bothers me the most, so I did the most incredible (and obvious) thing.  I told her to stop throwing the books.  And you know what?  She DID!  She tried again a couple of minutes later, and when I told her not to throw the books, she listened.   So I sat there and every couple of minutes I had to tell her not to throw the books, but I did not have to physically prompt her or force her to do anything.  I sat on my butt and talked, and she listened and followed a direction.   Of course as soon as I left the room she hurled the rest of the books and laughed.

I realize that the answer is to just keep a few books out and rotate them.  I’ll work on that when she is at school.

Reading Time

Nov072010

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.

Oct272010

We survived the pumpkin patch

This horse was her favorite thing

Well we did it, we survived the class field trip to the pumpkin patch.  It went way better than I imagined it would.   She walked three blocks to the street car stop, happily holding one of our hands.  She started to cry when we stopped to wait for the street car.  It was a bit chaotic, there were about 12 other special day class kids and their teachers, aids and parents, and they were older and larger.  She wanted me to pick her up, which I managed to avoid with a  hug and the new secret weapon.

Elmo has some competition now

The street car was very crowded, and R. started to cry once we were on board.  We were surrounded by a lot of people who mostly managed to disappear once they got a good look at all of us.  Seats magically appeared and I plopped R. into one.  She sat the whole time.  It sounds so silly to be so happy about this considering she takes a bus to and from school every day.  But on the school bus she has a seat belt.

Then we walked four blocks to the pumpkin patch.  That is definitely her world record for walking and hand holding.   She was really happy, walking with a little spring in her step and making her giraffe dance.   She started to cry and wanted me to pick her up a couple times when we first arrived at the pumpkin patch.  But I managed to get out of it with more hugs and rocking her.  It was very crowded, there were many school groups.  We stood in line for the hay ride, but the teacher wisely decided it wasn’t going to be possible to wait.  So we had 45 minutes to wander around a pumpkin patch.

R. was not impressed with the pumpkins.  Her teacher tried to get her to pick a pumpkin, but she put back every one she was handed.  I wonder if she thought it was just a whole bunch of vegetables.  Her teacher also told us that she and another boy in class  do not get along.  They bother each other on purpose.  They are both sensitive to being touched and of course they touch each other.  She said that she has to keep them apart during circle time.  This little boy was lining pumpkins up at the entrance of a hay bale tunnel and R. came along and put every one back.

I think her favorite part was a wooden horse in a tree.  I’m not sure what the point is of having a horse in a tree.  I looked around for a headless rider, but did not find one.   I found a quiet spot and sat with her and gave her a snack and then it was time to go.  The teacher has us go back on a bus which was a shorter walk.  It was standing room only so I found a place to stand.  R. sat down on a man’s lap!   He was a young tough looking guy, but he smiled and gave up his seat.  She sat like a bus riding veteran and walked back to the school like it was the easiest thing in the world.