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.

Happy Thanksgiving

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.

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

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.

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.

Giving up on greener grass

A friend and I each attended different support groups for the first time.  We both went there with the feeling we knew what we were doing for our children and left with quite a few questions.  I do think it is valuable to connect with other special needs parents, there’s a world of information out there that only seems be transmitted by this secret society.  I like to hear about other children and their therapies and activities.  But sometimes it is hard not to get into this endless loop of worrying if the therapy that parent X mentioned or the activity that parent Y mentioned is the missing piece of our intervention.   Never mind that we probably could not afford it and have no time in the schedule for anything else.

It can be difficult to make decisions about my child that could potentially be life-altering.  I think it is easiest to be confident when R. is making progress, and when things slow down I start to wonder about all the other things we could be doing.   One of the facilitators of the support group said that it was important to remember that our children are individuals, and what worked for her child wasn’t going to be the answer for ours.  I think she’s right.   I don‘t think I’ll ever be able to stop wondering what if we did this or that.   But now that I can look back on a year and a half of various therapies, I do feel like I can be confident about what is working.

So when I meet another special needs parent and she tells me her child is making great progress because of feline therapy and jello wrestling (yes I am making that up, and no I do not mean any offense to any therapy or intervention out there),  I’m going to think and say I’m glad that’s working out so well for your child.

Passing on Halloween

We decided that we are going to skip trick or treating this year.   I keep thinking that I should feel bad about it, but I don’t at all.  I guess this is a good time to admit that while I did dress her in a costume last year, I used the same costume the year before that.

Halloween 09

I have to wear this again!

We tried a few houses last year and I ended up carrying her most of the time.   She doesn’t like candy (I can’t believe it!) so the idea of trick or treating seems pointless.  I may find a costume for picture taking, but most of the costumes in her size seem like they should be worn by teenagers.  Maybe I’m just getting old.

In school they are doing all kinds of Halloween themed activities.  Next week the class is going on a field trip to the pumpkin patch.   We’ll be chaperoning of course.  They take public transportation, which should be interesting to say the least.  Lately R. hates any outdoor venue that is not a playground.

We drove by a pumpkin patch over the weekend and she screamed at the sight of it.   I warned the teacher, and she was not concerned.  She said She won’t be the only one having a fit.  An elementary special day class is going also, they do this every year.