Sep062011

I accept autism, and I have expectations

I’ve been thinking about what acceptance really means to me.

I have posted about acceptance before:
Giving up on greener grass
On acceptance
A letter to NT parents

I accept that my daughter has an autism spectrum disorder.  She will be impacted by autism her entire life.

What does it really mean to me to accept my daughter’s autism?
It means that I love her unconditionally.
It means that I don’t believe she will be cured or recovered.    (Not to be confused with progress.  I do believe she will progress)

Just because I accept autism, does not mean that I have given up on having expectations for my daughter.

As part of a parent training I took with a local support organization we heard a panel of speakers talk about various aspects of disability and discrimination.  Joana Fraguli said to us that every single one of our children, regardless of disability could go to college.

At first I kind of laughed to myself.  It is hard to think about college when a trip to the library is still unpredictable.   But then I realized that Joanna is correct.   College is not a topic I’m going to dwell on right now, but having autism doesn’t rule that out.

R. has a significant language delay that is part of her autism.   I accept that communication is a challenge for her.  Of course I hope that she will communicate more and more as she gets older.   I expect her to communicate at the best of her abilities (which are changing).  I expect that I and anyone working with her will prompt her to do so.

R. has some sensory seeking behaviors that are part of her autism.  I accept that she needs the input from whatever activity she is seeking.   But I expect her to choose activities that are safe and reasonably appropriate.    If she does not, I will redirect her.  When I catch her chewing on her sleeves or a paper towel roll, I’ll provide her with something to chew – food or a chewy tube.   When she wants to jump on the couch which is dangerously close to the window I’ll redirect her to her trampoline or even a bed.

What about acceptance in the community?

Again, I think it comes down to expectations.   At first glance, R. does not have an obvious disability.  The general public expects her to act like all the other four year olds.

I accept her challenges, and I provide her with the supports she needs to go out in public – taking her security items, sitting in the stroller if she wants.   When she puts her fingers in her ears I just ignore it (as long as she is happy) I don’t draw attention to it.

I expect the general public to leave her the heck alone when it comes to these things.  As long as she is not harming anyone, we have every right to go to public places, even if we look a little odd.   I expect that when people in the general population have more experiences with people who present differently that they will come to some degree of acceptance.

There was a lady in the elevator at Safeway and she was totally distraught that R. had her fingers in her ears.  This lady acted like R. had sprouted antlers.  Maybe the next time that lady sees a child with fingers in their ears she will not be so shocked.

I expect R. to behave when we go out.  That means I expect she will not cry and scream, throw things or deliberately misbehave.   If we go to a restaurant (so rare) or a party or something and R. is unhappy, we will leave.    But we will try again.

I think that the general public does not really understand autism, and it is only through personal experience that people can come to some level of acceptance of people with disabilities or even people who are different.

R.’s teacher told me about a few general ed elementary girls who walked by the class and asked if there were students with autism.  The teacher said yes and the girls said aww that is so sad.   The teacher actually got angry and said, it is not sad, these kids are not sad or unhappy.  Look at them, they are all having fun!

Personally I think it is kind of sad that these girls are so unaware of other students at their school.   But that is probably a whole different topic.

We went to the playground and there was a boy probably 8 or older there with his Mom and baby brother.  He seemed very bored, talking to all of us looking for attention.  He was playing with a remote control vehicle, and it got R.’s attention.  She said wow and gave him the sense she was interested so he started performing for her.   She followed him around for a while, and when she stopped he actually came back to her with the vehicle trying to get her attention.

He did not even acknowledge her lack of language. He was not phased when she ignored his attempt to hand her the controls.  What an incredibly accepting kid!  How did he get that way?  Of course I could not ask his mother.    But meeting that boy gives me great hope.

I accept autism, and I genuinely hope that the rest of the world will come to do so also.  But I think that the general public has to learn to expect autism, before they will be able to accept it.

Sep052011

Kindergarten Obsession – it begins

I’m going to be writing about kindergarten more over the next few months.

Here in San Francisco, the process is fairly complicated.  We have to select up to seven schools and then one is chosen (hopefully) from the list.  The IEP team chooses a service type and that narrows the available options.

I will start touring schools next month, and then I hope I will get a better idea of what type of class would be a good fit for R.   We have to make a decision by the end of January.

I’ve been trying to read blogs from families with children who are going through or have already experienced the kindergarten transition.

Autism and Oughtisms writes about her reflections on his first term at a special needs school. 

She pointed out to me that R., being moderately affected by autism could potentially fit into any class.   The labels sometimes seem meaningless in these situations.

Autism Wonderland has been documenting her journey with her child with autism who is starting kindergarten.   She lives in a big city, and their process seems as convoluted as ours here.

Here’s a post called when autism and kindergarten meet

Sep012011

Please turn down the volume

Chipotle is my favorite fast food.  I guess it is not really fast food, but it is quick and I don’t have to cook.

R. only likes the chips.  But she really likes them and would be happy to sit for a long time if the music were not so loud.  I also have this fantasy of her eating beans or rice or even cheese.

I wrote an email to Chipotle and told them how much I liked their food, but that the music is too loud for my daughter with autism.  I suggested that they have a sensory friendly night once a month like AMC and turn down the music.

I received this reply:

Thanks for taking the time to write to us. I am sorry that the music is too loud for you and your daughter at our restaurants. Our music is supposed to be part of our dining atmosphere and should never be overpowering to the point where someone, like your daughter, cannot eat in our restaurant. The music levels should be adjusted based on the time of day and the amount of people in the restaurant and should merely be a fixture in the background for your enjoyment, and I apologize that it is too loud. I will pass your suggestion along to our team to see if they can accommodate your request for a “sensory friendly” time in which your daughter could eat at our restaurant without worrying about the music being too loud.


Sincerely,

Austin

Austin Roberts | Customer Service
Chipotle Mexican Grill

If you want to write to Mr. Roberts directly, his email address is troberts@chipotle.com.

Next up – I’m going to write to Trader Joe’s.  R. starts to block her ears in the parking lot the music is so loud at one of them.

Aug292011

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.

Aug262011

The zoo gets better all the time

First trip to the zoo

We’ve been taking R. to the zoo since she was a baby.  Last year we decided to get a membership because she finally seemed to notice the animals.

We try to switch up our route, so she does not get too fixated on any one thing.  For the longest time she only wanted to get out of the stroller at the bear exhibit.

Gradually over  the past few months she is getting out of the stroller at different places.  Which is great, but she always has to carry Elmo, Ernie and her water cup.  It could be worse, but it is still cumbersome.

We  were never able to take her into the petting zoo area because she did not want to get out of the stroller, and if she did she had too much stuff.   So I really talked it up one day, and told her only Elmo could go see the goats, Ernie and the cup had to wait in the stroller.  It actually worked, and she loved seeing the animals up close.  Now it is a regular part of our visit.

She likes to ride on the carousel. She sits on my lap on the bench so maybe that doesn’t really count, but she seems to enjoy herself.   She also has recently developed a love for the train.  I’ve started a rule that only Elmo goes on the rides.    Anytime she wants to get out of the stroller, I also insist Ernie and the cup wait for her.

She has been getting out more and more, she will reach out and hand me Ernie and the cup, and I have to be quick so she doesn’t run off somewhere.   She is pretty good about looking for me, but it still makes me nervous.

The last time we went to the zoo she jumped out and ran for the train yelling train, train.     I think we’ll have to avoid walking by it if I don’t want to take her for a train ride.

Aug242011

Only Say Hi if You Mean It

ABA has been working on some sort of greeting program since R. started therapy over two years ago.  The ABA provider during EI tried different techniques.  They taught R. to do a high five and used that as a greeting for a while.  It did not transform into a natural wave as they were hoping, but it did help with imitation programs later and it is a social thing to do with someone.

Then they took photos of each therapist and enlarged them so they were a little larger than the size of an adult head.  They cut them out and laminated them and attached them to large popsicle sticks.   I guess the idea was that they would hold one up and she would wave at it.  It did not work, but she loved all the faces.  She would gather them all up and arrange them in a circle around  herself.   It was funny, all the therapists were uninhibited in their play and interactions with R., but those faces on sticks made them all uncomfortable.

By the time she started preschool she would say bye to the therapists, but only when they were at the door.  It was like they had to really mean it.  Our current ABA providers did not put any emphasis on a greeting program at first.  At our last team meeting with the teacher before summer started, everyone seemed to say that she would say hi or bye when someone said it to her.    The ABA supervisor said they would do an actual greetings program.  I told them about our previous experiences, and suggested they keep it natural.

At first they only ran the program when a second therapist or the supervisor or behaviorist was there.  The second person would go outside R.’s door, knock and enter and R. is supposed to say hi.  She did this fairly well, although after the second time she seemed to lose interest.

About a month ago they started doing the program with just one therapist, but not every day.   It seemed like it was going okay.  Sometimes R. would play along and say bye, see you later when they walked out, making into a game.   But in the last week they have been doing it every day.  I think they are trying to master it out.  And for some reason she will not say hi consistently.  I think it is because it does not feel natural.  Why should she say hi to someone who has been sitting with her for the past hour?

The supervisor went to observe the classroom this week.  R. walked up to her and said hi.

Aug162011

Paying too Much Attention to Theory of Mind

I’ve been thinking about how to discuss autism in a way that is more than just a list of symptoms.   I would like a description that includes the seriousness of the disability but with terms that don’t indicate that having autism is a static unchanging condition.

It is common to read that people with autism have an impaired theory of mind.   Rachel Cohen-Rottenberg has an interesting take on this.  So does Patricia Harkins.

In the book Adapting Minds by David Butler, the author says that Simon Baron Cohen has argued that autism is evidence for a theory of mind module.    The author goes on to explain why he thinks this idea is incorrect.   He makes a lot of good points.

The main point of the author’s book seems to be to discredit evolutionary psychology, and he has an issue with the idea of modularity (as it relates to the brain) in general.   (Here’s an interesting evolutionary psychology primer.  The blog author was nice enough to answer my question in the comments.)

David Butler writes:
An essential characteristic of modules is that they function independently of one another.  Consequently if a module is impaired or malfunctioning, highly specific forms of cognitive or behavioral deficit should result.  These deficits should be confined to the domain of the module and should not affect cognitive or behavioral performance in other domains. 

David Butler takes issue with the false-belief test that is usually used to prove a lack of ToM.  He writes:

Rather than simply being an inability to understand the minds of others, autism appears instead to prevent individuals from being able to damp down the total array of irrelevant inputs to the brain.  

Thus, while autism does involve an inability to pass false-belief tests, it encompasses a wide-ranging array of cognitive and affective deficits relevant to understanding others.   The strongest confirmation of the theory of mind module hypothesis would come from a deficit that disrupted theory of mind but left all other abilities in tact.

If a theory of mind were acquired from some more general learning disabilities, rather than being embedded in a module, it would not be surprising that autistic children fail to acquire a theory of mind given their avoidance of interaction with other people and their inability to attend to complex and changing environmental stimuli. 

Here is a link by others that seem to have the same opinion.  And another.

I think part of what bothers me about the idea of defining autism as a lack of aToM module is that it seems to imply that the brain is static, and that ToM is either on or off.     The term mind blindness or context blindness is very similar.  Why can’t we call it context nearsightedness or mind farsightedness?  I realize that autism is a serious condition and that many individuals have significant disabilities.  But why should we use terms and phrases that are inherently negative and not completely accurate?

I wonder if it would be more accurate to talk about joint attention instead of ToM.  That is really closer to the root of the issues, and does not involve the idea of a self contained module in the brain.

In a review appearing in the October issue of Current Directions in Psychological Science, a journal of the Association for Psychological Science, University of Miami psychologists Peter Mundy and Lisa Newell summarize recent findings supporting a theory of joint attention dubbed the “attention-systems model.”
This model proposes that human social cognition is really the extraordinary result of two basic forms of attention. One type of attention, regulated by a specific set of neurons in the brain, involves paying attention to the external world and the actions of people. The second type involves paying attention to the self and is regulated by a different network of neurons.
Mundy and Newell propose that the key to human joint attention is that these two areas of the brain become interconnected throughout development and interact so we can simultaneously keep track of the direction of self and other’s attention. Interestingly, communication between brain regions, especially those implicated in initiating joint attention, is one of the main cognitive impairments of autism.

It seems to me that it is accurate to say that autism involves a deficit in processing information that leads to delays in joint attention,and the delays in joint attention lead to the symptoms we commonly associate with autism.

A description like this implies significant disability is possible.  But instead of describing autism as a lack of humanity, it seems to describe how what we call autism really is a natural part of the human condition.   It also offers a root cause (a deficit in processing), and the idea of developmental progression.  So contained within the description are ways to help an individual with autism.

Reference: Adapting Minds, David Butler, (The MIT Press, 2006) pages 191 – 193

Special thanks to L. for talking me through this and suggesting the perfect reading material.

Aug152011

Back to School

The last week of summer vacation felt particularly endless, but all in all I really can’t complain about the time off from school.   I’m glad she is back to school today, and I know she is likely even happier about it.  But I can’t help but feel a bit of anxiety thinking that this is her last year of preschool.  The first day of school puts me that much closer to confronting the subject of kindergarten.

This summer it felt like it was so much easier to enjoy time with R.  She actually seeks out my attention, and not just when she wants something.  If she is watching television upstairs and I go downstairs to deal with laundry, it used to be that I could fold the entire load and she would not really notice I was gone unless she wanted something.  Now after a couple of minutes she comes to look for me, and she will stay with me until I am finished.

It also seems like she is easier to entertain.  I don’t have to plan out what felt like elaborate song and dance routines like last year.   She has her own ideas about what we should do.  I think we played the good night and wake up game several thousand times.

She also seems to be completely offended by the sight of my bare arms.  I suspect it is because she rarely sees them, in San Francisco we don’t get warm weather in the summer.  If I pull up my sleeves to do something, she will pull them down.  Yesterday I actually put on a short sleeve shirt and she got a jacket from my closet and insisted I wear it.

Not only have we been regularly using a babysitter, but R. has been going to the playground with the sitter.  (One of our regular therapists).   One of my autism Mom friends has been offering to watch R. at her home.  So we took advantage of that – dropping R. off and going to Costco all by ourselves.  What a wonderful and strange feeling it was to drop my child off at a friend’s house.   (Thanks C, you are the best!)

Aug042011

Summer – 30 Minutes at a Time

Elmo has wheels

I found this skateboard/scooter thing at a garage sale, and it seems to satisfy R.’s new craving for wheels.   She calls it a bicycle.  She won’t actually ride it yet, but she is having fun.

We have been doing what I’ll call official potty training for four weeks – since summer school ended.  I put her in underwear when we are home and take her to sit on the toilet every half an hour.    It is going well from the perspective that she is compliant about sitting, and when I say time to go potty, she will usually get up and go right into the bathroom.    She has only had one success so far, and she put her fingers in her ears when she heard herself peeing.

She can go a long time between peeing.   So after it has been an hour or so, I reduce the amount of time between trips to the bathroom.   It makes the day feel kind of endless, so I’ve been trying to make the best of our five minutes.  We still look at books, but that is not as exciting now that we are in there so often.  I’m letting her put stickers on the bathroom wall while she sits, and I moved a small TV table into the bathroom.    We are using it for coloring and drawing, doing sticker books playing with legos and anything else I can find.  I’m trying to teach her to play memory type games – the ones with cards you flip over to make pairs.

At first it seemed like she was intentionally going right after sitting on the toilet.  She did not give any indication that she noticed she was wet.   But she stopped doing that, and it seems like she is becoming more aware.  In the last couple of days she has actually said something either after or while she is peeing.  The other day she was sitting at the table and she jumped up and said wow.  She had peed, and after she had new clothes on she kept going back to look at the wet spot on the chair.  This afternoon she said oh, and grabbed herself.  I asked her if she had to pee, and told her to pee in the bathroom.  She ran in, but it was too late.

When she has an accident, I take her into the bathroom and have her sit on the toilet and help her get changed.   I don’t have her sit for the full five minutes.   Everything we are doing is based on the the advice from the behaviorist.  She had ABA sessions for the past three weeks (this is the last week until school starts), and I’ve been having her go sit multiple times during the session.

I realize that this is going to take a long time.  I remind myself that every time I get frustrated waiting for R. to do something particular, just when I’ve nearly given up, she gets it.

Jun292011

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.