Catching up

You’d think I’d be all caught up since R. went back to school on Monday, but it is not happening yet.   I’ve been on a mad reorganizing binge because R. has found her way into drawers and cabinets that she did not bother before.

I was quite surprised to find out we had a box of caps stowed away in a drawer.  I saw her with a box, and saw small bits of what looked like paper all over the floor.  As I walked over to investigate, I stepped on the paper and heard pop pop pop.  What a mess!

She also discovered the china my Grandmother gave me that belonged to my Great, Great Aunt.  In R.’s defense, she wanted to set the table with them.

She is finally sitting on the toilet with her pants and pull-up down.  That just started this week, and it is going a bit better than expected.  She only has to sit for four seconds at a time.  They want to phase out the counting, but give her a cue, so they say for a count of four, and then just say one and four.

We just got our new ipad today.  I haven’t had much time with it yet.  I know it will be yet another distraction…

Girls have autism too

April is Autism Awareness month.  I’d like to see more awareness that girls get autism too.  Thanks to DS Walker for the inspiration.  Some think that girls with autism are under diagnosed.  This seems likely to me, I wonder if we will see more females with autism in the coming years.  I know a few, but the boys do outnumber them.

I know that most of the therapists we have worked with, especially the ABA therapists have mostly worked with boys.   In many ways I think that works to R.’s advantage.

As she gets older R. becomes more girly, I don’t think I’m overly encouraging this.  She is naturally gravitating towards pink and purple.  When she does initiate with people she acts like a girl, she’ll smile shyly and approach quietly.  We’ve been lucky so far in preschool there have been one or two other girls in her class.  I wonder if there will come a time when she is the only girl in her class.   How will that impact her?

There are many bloggers writing about their daughters with autism.  I’ll try to mention a few of them that I read.

Autism Army Mom
DS Walker
Puzzle Piece Princess
Professor Mother
The Simile of Autism and Snowflakes

Welcome to my planet
Countering Kim Wombles
Life with Aspergers

 

Here are a couple of sites specifically for women with autism

Autism Women’s network
Girls with Autism

Since most of the reports and studies seem to only have male participants, I did a little searching for ones that featured females.

Sex differences in the evaluation and diagnosis of autism spectrum disorders among children.
CONCLUSIONS: Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Autism Symptoms and Internalizing Psychopathology in Girls and Boys with Autism Spectrum Disorders.

Reading comprehension, word decoding and spelling among girls with ASD or AD/HD: performance and predictors.

Here are some details from a presentation given by Lori Ernsperger and Danielle Wendel, authors of: Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges.

Here is an interesting theory about how females are more likely to suffer from right brain caetextia than males.  They feel that this is an unrecognized type of Aspergers Syndrome.

Here comes spring break

Spring Break has an extra day tacked on as a furlough day, so it started on Friday  The school department is trying to save money.   School actually ends for the year before Memorial Day, so it seems like we are getting into the last stretch before the dreaded summer.

I’m still waiting to hear about ESY.   I’m fairly certain it will not be at R’s regular school.   Which worries me a bit, but if they can finally finish the construction over the summer it will be worth it.

R.has been saying more spontaneously.   When I would normally prompt her with a word, I can wait and give her an expectant look and she is saying a word more often.  The word I prompt the most is come.  I make her say it every time she hand leads me.  She is starting to say something as she pulls my hand some of the time.  But with E. she’s doing it almost all the time.  A couple weeks ago she was saying what sounded like Da cuh then last week it sounded like Duddy come, and now it is really Daddy come.  She’s also saying Daddy no.

She is labeling things, which is new.  I mean just naming an object she sees, not saying the word because she wants it.  She has really only labeled numbers, labels and shapes before this.  Mostly she is labeling animals and food.

R. has also developed some separation anxiety or something like it.  She has to know where I am at all times.  I don’t think she cared too much before.  Especially when we go out, she is constantly looking for me.  E. will be pushing her in the shopping cart and she will be craning her neck trying to see where I am.   I remember during our assessment with the ABA provider for early intervention, the program director told me that R. should be referencing me (looking for me) constantly.    Of course she wasn’t.

Someone always leaves the gate open at the playground, and I usually spend most of my time trying to beat R. to the gate so I can close it.  A useful side effect of this constant looking for me, is that she is not running away at the playground.  She runs off and she comes back, especially if I don’t follow her.   She also used to run right for kids on the swings.  I think she really wants to know what it would feel like to be smacked by someone on swinging.   Lately she’s actually been just watching the kids on the swing, and I’ve seen her stop short so she doesn’t get run over by a kid on a scooter, or kids just running around.    It’s like I could actually sit down at the playground, if she would let me.

Showing her how rewarding life can be

One of the reasons that people seem to get down on ABA, is the use of reinforcers.  I’ve heard it equated to animal training.   There is some truth to that analogy, and I’ve learned that is not such a horrible thing.

When we started ABA during early intervention, the program director spent a lot of time asking me and working with R. to determine what she really liked.  At the time, it honestly wasn’t much.  Other than balls or bubbles, she had a few stuffed animals she liked.  She liked watching Sesame Street, but Elmo and friends weren’t BFFs yet.   Naturally they wanted to use food items, and I bristled at this, but I compromised, and asked that they not use her meal time food as a reinforcer, only snacks and treat.  As worried as I was, the food reinforcers actually did not work that well.  She would quickly tire of whatever it was, and she was not always hungry.  She had sessions for 5-6 hours a day at that time.  If every therapist offered her snacks, there was no way she could eat it all.

The Program Director asked about using videos on the therapist’s Iphones as a reinforcer.  I said my only concern was that R. might be more interested in watching videos and cry when they were not available.   The PD said that if they were that motivating, they would do the trick.

The videos actually worked great.  R. was really motivated to watch them, and she quickly learned that she was expected to do something before she could watch one.  That sounds really simple, but there are really several things that the consistent use of a reinforcer taught her, even at that early stage.

  • There are things she wants that an adult has to provide
  • Her actions are directly responsible for getting her desires met
  • If she pays attention to an adult’s requests, and complies with them, she will learn the actions required to get what she wants.
  • She can wait for things she wants, even for a short time.

I know that there are some parents who think that children are praised, rewarded and bribed too much, granted these are generally NT parents.   So what is the difference between a bribe and a reinforcer?   The way I see it, a reinforcer rewards desired behavior after it is done.  A bribe rewards a behavior whether it is desirable or not before it is finished.

A good example is crying.  If R is crying and I know some gummies will make her happy, if I give her the gummies while she is still crying I am bribing her to stop crying.  I am also teaching her that the way to get gummies is to cry.   If I show her the gummies, and  get her to stop crying and say gummies and then give then to her, I am reinforcing her use of words.  I’m teaching her that yes I know what she wants to make her happy, but she has to use words to get it.  Crying doesn’t work.

Now R. is really in touch with the fact that she is expected to do something to get her requests met.  She is primed, waiting for a prompt to tell her what to do.  We have to be careful to wait to see if she will say the word spontaneously.  Sometimes I’ll tap the item, which is a mistake because she will copy my tapping, thinking that is the response I’m looking for.  Slowly but surely we are hearing more spontaneous words.

I think that we all respond to reinforcers and even bribes all the time without thinking about it.  It is really necessary to analyze all of the ways that we are reinforcing her behavior even if it is unintentional.   I gave R. a piece of colored chalk and a chalkboard and she scribbled for a while until the chalk broke.  She brought me the pieces, I assume she wanted me to put them back together.  I gave her another piece of chalk.  She broke the next one, brought me the pieces and I gave her a new piece.  I was watching her and the first two times it seemed like it was an accident that she broke the chalk, it broke while she was scribbling.  But the third time, she scribbled for a bit, and then intentionally broke the chalk in half and came to me for another piece.  Even though I had her say chalk each time, she had quickly come to the conclusion that breaking the chalk was the key to getting another piece.

I suppose that someone who is anti-ABA could argue that the faulty methodology behind ABA’s teaching has led my daughter to make incorrect generalizations.  But I really think that this is a reflection of how R. tends to generalize things.  She does not make the same connections that I would.  Her vision of cause and effect is limited, but with repetition and experience her skill in this area gets better and more functional.

Now she has the ability to understand first this and then that, as long as we are talking about something she understands.   This is really useful.  There are many opportunities to tell her if you do this, then you get that.   I am working on getting her to wait for me when she requests something.  She always wants me to drop everything and comply with HER request.  I’ll tell her first I’m going to have a sip of my coffee, then I’ll get you a cookie.

I also find that when she needs to do something new or different that she is aversive to,  if I explain it simply and give specific perimeters like counting- do this for a count of five, she is much more compliant.

Some people ask if ABA is constantly rewarding for desired behaviors, does the child spend the rest of her life looking for a reward for every task completed?   ABA does actually have a system of fading reinforcers and using a hierarchy of more and less motivating items depending upon the difficulty of task.    I’ve also found that while the therapists still use toys and food reinforcers, they also sing songs and do all kinds of silly games with R. that she likes.   She asks for these activities, so it is like her reinforcer is doubly rewarding – she is rewarded for completing her task, and she is motivated to do something social.

I don’t see R. becoming like a trained dog, looking to perform tricks for treats.  It’s more like she’s a social being in training.  She’s making her own study and practice (with our help) of how rewarding just the act of socializing is, and how crucial engaging with others is is to getting her needs met.   She’s also learning that while the world is filled with many unknowns,  there are also plenty of great things.

Is it Monday yet?

R. has been home sick all week with a virus.  She’s back to health in time for a stormy weekend.  She only wants to play in the back yard, but it is too wet.  I think she has figured out rain, because whenever there’s a break she tries to drag me to the back door.

Best haircut ever

Friday was yet another day off from school.  I don’t think they have had two full weeks in a row of school because of holidays and furlough days.   I scheduled a hair cut appointment, because it was well overdue.  I probably should not have scheduled it the day after her annual doctor’s appointment.  After that experience I was totally dreading it.

This is R.’s third professional hair cut.  The stylist’s name is Hanan, and if you are in the area email me and I will share her contact information.  She is really amazing.   The first time R. screamed and fought the entire time, but she managed to get it done.  Hanan sang and remained calm and unflustered.  The second time she screamed for about two-thirds of the time.

We arrived right on time, not at all early and Hanan was waiting, her chair empty with a booster seat ready.   R. whined a little bit when I put her in the chair.   We used a cape to wrap around her waist and tied it to the chair. (We do this every time).  Hanan had a portable DVD player set up and playing on her counter.   R. refused the cape over her clothes and we let her.  A little hair is no big deal.

Usually I hold her hands and E. holds her legs.   I held her hand and rubbed it, and she sat there and let Hanan cut her hair.  She did not cry or scream at all.  I was really just holding her hand, more than forcing her to sit, and her legs did not need holding.  She sat there calmly and got a hair cut.   By the end she was actually watching one of the other ladies get her hair done.

Of course I am thrilled, but I can’t help but wonder why the hair cut was so much easier than the doctor’s appointment.   I find getting a hair cut more pleasant than going to the doctor.  Maybe I should not compare the two experiences.

Doctor this

We had the most torturous annual checkup yesterday.   Everything just took forever, we were there for an hour and a half.   It was partly because we were seeing a doctor who is not our regular pediatrician.  He was nice but slow and not prepared.

R. was totally uncooperative.  She fought being measured, weighed and every thing else.   The nurse started by bringing us into a tiny room to get her ears checked.  They have never done this before.  I informed the nurse that she had autism (you would think it is on her chart!) and that she did not answer questions.   She said oh that’s okay, she just has to wear these headphones and raise her hand when she hears a beep.    In the time it took her to say that R. reached for the headphones.  They had blue and red ear pieces and probably looked interesting.  We tried to get her to wear them, and then to remove them from her possession, both of which made her scream.  So by the time we got into the exam room she was in a mood.

I’m just about at the point where I can not physically control her when she is fighting.  She is 41.75 inches tall, that is more than half my height.  If I hear Just hold her on your lap Mom, one more time…   We finally had to resort to the cruelest method for all involved so that the doctor could check her ears and body.  E. and I held her down on the exam table and the doctor did what he needed to.  That was not as easy as it sounds, even with the two of us.

I left the office determined to find a more autism friendly place.  But now that I’ve had a night to sleep on it, I realize that I need to take total control of these visits.  I plan to talk to her regular pediatrician about this, but here’s my ideas so far.

Call the office before the appointment and get a list of every thing they will do that involves R. – weighing, checking ears whatever and I’ll make a chart for her with pictures.

I think we need to start playing doctor at home – measuring, weighing, and wearing headphones.  The only thing she did not protest was being checked with the stethoscope.  She has a play one which I brought, and the doctor spent time “checking” E and I, as well as Ernie and Elmo.

I think I will put R. in a dress with no pants for the next doctor appointment.  She hates having her clothes taken off.  She doesn’t like her legs bare, but its time for her to be a California girl.

The doctor spends a lot of time asking questions and discussing the responses.  This is all good, but it is a long time for R. to wait.  I think I’ll see if I can get them to let me go in and answer the questions before R. comes in.   E. can take her for a walk.

This sounds awful and cruel, and I hesitate even to write this, but I wonder if there is some way to strap her down on the exam table.   Straps would hold her more consistently and enable the doctor to get everything done faster.  I think she would like the feeling of the straps more than E. and I holding her.

Why does she do that?

I’m sure every parent has to deal with some annoying habit or behavior from their child.   I think this is more challenging when your child has limited or no verbal ability.   I try to think that everything she does has some purpose behind it, no matter how strange it seems to me.   It can be hard to strike a balance between figuring her out and not spending all my time analyzing every move she makes.

Dealing with her sensory seeking behavior is easier for the most part.  She usually seeks out the same types of activities, and if I let her or redirect to something similar she usually gets it out of her system after 10 minutes or so.  Even a year ago she could spend 20- 45 minutes jumping on the trampoline, laying/rolling on the beanbag or under cushions.

She has been really obsessed with water play.  She will not let me do the dishes, wash my hands or anything involving the sink by myself.  She actually shoved me and said my turn.   This gets old quick, but it is better than playing with her saliva on the window which was a favorite activity just a few weeks ago.   Sometimes when I have totally had enough water play I can redirect her to play dough.    I think school is partly to blame for this obsession.  They have a water table and the teacher has them wash dishes and cars and dolls and their clothes.  She makes it very fun.

The chewing seems to come and go in intensity.  Sometimes I think it is in reaction to being overwhelmed.  Other times I think it is boredom.  She is getting better about not chewing on her books, chewy toys and access to toothbrushes have helped with that.  She also understands that she is not supposed to chew on books and will stop when she is caught.  What drives me crazy is when she chews on her sleeves.  I don’t know why those slimy sleeves bother me so much, but they do.  She was doing that all the time over the summer.   Now it seems like she only does it when her sleeves are wet.  And of course she hates having her sleeves pulled up to play in the water, so with all the water play her sleeves are wet fairly often.  I have found the cure is to change her shirt.  She can’t stop chewing on the wet sleeve, but she doesn’t chew the dry shirt, at least for the moment.

One of the most difficult behaviors to decipher is throwing.  Throwing things just for the heck of it can be fun, at least for small children and definitely R.  She likes to hear the sounds that different objects make, and she likes to watch where and how the objects fall.   She will throw things in anger, or sometimes it seems like she throws things just to exert control over something.

When she throws something in anger, I try not to show a lot of emotion unless it she’s tossing chairs over (thankfully that phase is mostly over) or doing something dangerous.   I have been working for years now on getting her to say something instead of throwing, hitting or screaming when she is angry.  I started with just saying Ohh or Arrggh, now I’ll say Hey or Stop.  I am hearing her say hey spontaneously occasionally.  I’m sure it will take a long time for her to learn to express anger.

The throwing that seems to be for no reason, or when she sweeps everything off a table or a shelf can be maddening because of the mess and because of my desire to know what she is thinking.  Autism Mommy Therapist wrote about her son in the post Ninety-Nine Questions, and  this helped me come to a better understanding about this type of behavior.  She writes:

I try to derail him from his compulsions to reorganize and recatologue because he can’t ever seem to force his configurations into coherent order. His attempts,sadly, seem only to leave him in greater distress.

With R., I don’t get the sense that she is in distress, it is like a restless seeking.  Sometimes she seems more frustrated than others.  But the idea that this behavior is an attempt to reorganize her world seems to be accurate to me.   It helps me decide how to respond.  I would like to let her do what she wants, to an extent.  At home I’ll let her go to town with one group of items – the contents of her toy box or a book shelf,  but I will put them away when she goes on to the next group.  Some people say that you should force the child to help with the clean up, but that is counter productive with R. at this point.  I find if I put things away, she will join in at least half of the time.  And I have actually seen her put a few things away on her own, although she does then often knock them back over.

This kind of throwing behavior is usually the worst on rainy days off when we are mostly stuck inside.  I think it means she is bored.  She is usually quick to become frustrated or angry during those times.   Often after school and therapy she just seems to want to do what she wants, she wants to knock things over and throw.  But she is incredibly happy, laughing, talking and singing, and engaging in some appropriate play along with the throwing.

She’s four years old today

R.’s birthday is today, she is four years old.  I realize that she is still a young person, but it seems so old at the same time.   From this point on, she will have spent more than half of her life as a person with autism, and in the presence of various therapists and professionals that the average child does not encounter.

I feel differently about this birthday.  I think in a way, I dreaded all the other birthdays.   It was like each birthday was a formal reminder of all the unmet milestones.   I don’t know when it happened, but recently I started feeling differently.  I’m actually kind of excited that my baby is turning four.  Sure I wish she could tell me what she wants for her birthday or if she would like a party or particular activity.   I could fill pages with all my questions and concerns.  This year I want to celebrate that I have known and loved the wonderful person who is my daughter for four years.    Every day I learn something more about her and also myself.

We had a small party at home, I just invited another autism family.  We got her a few balloons and they had the most fun with them.   Her friends were so cute wearing the party hats.  R. wanted no part of wearing them, but she enjoyed everyone else wearing them.

She actually ate some of a cupcake.  I have never seen her touch anything with frosting before.  I wonder if she learned that at school.   Foolishly, I did not think she would have any interest in them, and I left them on the counter.  E. caught her,  and rescued them.

Elmo has a new home

R.’s birthday is on Monday, and my Mom has been wanting to get R. a dollhouse for a while now.    We put it together and gave it to her yesterday so she would be able to play with it this weekend.

She noticed it the second she came in the house.  She was all smiles and saying oh yay while she investigated the entire house.  The house came with a Mom, Dad and twin baby dolls.  She loves the Dad doll, she brought him to dinner (a space usually reserved for only Elmo and Ernie)

The dollhouse is the Fisher Price Loving Family Dollhouse.  My Mom and I spent a few months researching the dollhouses and this seemed like the best one.  I do kind of wish it wasn’t pink, but I think R. likes that it is. She likes pink.  The house was easy to put together, and it is very sturdy.  She has been trying to sit on the side rooms.  I guess they do kind of look like a seat.

The house has no electronics, which is fine with me.  All the furniture seems to light up or make sounds.  I do think it would have been nice to have a working doorbell, even an old school no battery one.