A reason to behave

R. had a couple of bad days at school with hitting, but Thursday and Friday were behavior free.

It is getting much better at home too.   I’m making a real effort to use positive language and avoid saying no and don’t.

We are also all reacting to the behavior in the same way – we block her from hitting, and ignore her – no words or eye contact.

I think the biggest difference is that when she does hit, she is able to snap out of it quicker.  Even a few days ago it was like she was caught up in this cycle of having to complete the hitting behavior before she could do anything else.

It makes me really think about how much her behavior is dependent upon those around her.   That’s the case for all of us really.

Maybe I’ll never know exactly why she decided hitting is a good way to show her displeasure, although it seems like a logical reaction.   But I do know that how we reacted just made her want to do it more.   Our behavior was actually reinforcing to her, even if in the moment it seemed at least to me that we were both unhappy.

I think that a parenting lesson I am learning is that I should strive to remove any power struggles that arise.   This does not mean that she should be able to do whatever she wants.  But it does mean that I have to give her a reason to do what I ask, especially if it goes against her own desires.

I don’t think that she stopped hitting because I told her to, she stopped because she did not have much reason to do it anymore.   I do think that we are lucky that the solution has been relatively simple so far.

Keep your article, LA Times

I don’t usually post about articles or current events but after reading the article in the LA Times Unraveling an epidemic, I can’t keep quiet.

This article seems to imply that the journalist thinks parents of children with autism are some how cheating the system.  The parents’ pursuit of services for their children is portrayed in the most negative way possible.

These services aren’t housecleaning or a massage. These are actual therapies that have been proven to be able to help children with autism and other disabilities.  I think it does people with autism and their families  great disservice to write about them this way.

Studies have shown that investment in early intervention saves money over the life of the person with a disability.  I wonder why this article did not include any of that data.

Research shows investment in early intervention saves money long term

Independent reviews of early intensive behavioral intervention

Early intervention for toddlers with autism highly effective

Early intervention lessens impact of autism

List of articles and studies suggested by wrightslaw.com

I also think that the quote from Bryna Siegal is a good example of how an autism diagnosis is subjective and how professional’s subjective opinions are both driving and keeping our children from getting services they need.  She does not mention any evaluation methods, it seems like she just came to her own conclusion about this child.

Can you imagine trying to get help for your daughter and being told by a professional that her problems (what a terrible word for a professional to use) stemmed from obsessive compulsive disorder and poor discipline at home.   And then being told there were plenty of other children in greater need.

I don’t know that Ms. Siegel told the last part to the parent, but the fact that she said it in an interview with the LA Times puts it out there.  Did Ms. Siegel suggest cognitive behavioral therapies could help this child?

How did she come to the conclusion that poor discipline was at the root of this girl’s issues?   The child already had a diagnosis of Aspergers.  Did Ms. Siegel test the child’s auditory  processing abilities?  I would think that a professional would know that what appears as discipline problems can also stem from receptive language issues, anxiety and need for sameness to the point they don’t understand what to do if an instruction is different.  If somehow Ms. Siegal had intimate knowledge of how this family interacted at home, and indeed there were issues of poor discipline, why did this professional not offer the family some advice?

I wonder why this article did not mention that people with autism can additionally be diagnosed with obsessive compulsive disorder.  One study showed that 17 % of people with autism also have OCD.

I also wonder why this article did not at least briefly mention that there are commonalities between autism and OCD.  This study found that attention switching problems may reflect both symptom overlap and a common etiological factor underlying ASD, ADHD and OCD.

I do realize that there can only so much information that can be in one article.  I think it is unfortunate that people with little to no knowledge of autism will read this and find nothing to encourage them to be accepting of autism.

Getting it together to pay attention

Joint attention is very simply, the process of sharing experiences or information with another person using non verbal communication.

It seems that joint attention is really at the root of the common issues relating to R.‘s autism.   Not long ago I was wondering exactly what happens in my daughter’s brain when she is progressing developmentally.   It is a simple, and likely not complete answer, but it seems to me that improvements in her joint attention skills have led her to be able to speak, to imitate and process receptive language better.  It has helped her play skills and probably several other things.

I can’t help but wonder what exactly led to R. gaining joint attention skills.   Again, this is a simple and incomplete answer, but I think it has to do with sensory processing.

Back when R. was two, she was so overwhelmed by processing the sensory information she was receiving that she really could not process much.   She could not pay attention to much of anything in her environment completely because she was caught up in paying attention to herself.

At the time her running, jumping, crashing and other sensory seeking behaviors made her appear wild.   But in retrospect I realize that she was really quite determined to give herself the input that her body was seeking, and that needed to be fulfilled before she could process anything.

When she was three we dropped her nap, and I think things really improved for her after that.  It could be at least partly coincidence, but I do think that it did help her.   She has always been a good sleeper, but not so good at the waking up transition.  So when she napped, she was going through that transition twice, I think she lost a lot of time to that (and sleeping) that is now taken up by activity.

Shortly after turning three, she began to imitate and developed echolalia.   She also began to be anxious in some public settings and to exhibit her first sensory avoiding behavior – putting her fingers in her ears.

I don’t think it is a coincidence that when she was finally able to pay attention to more of her world, she found it kind of scary or at least overwhelming.  I think that putting her fingers in her ears gives her great power over her environment.

Ultimately I think that is the best answer.   R. is able to process sensory input because she has found ways to tolerate and likely understand the information on her own terms.  Even when she was at her wildest, I always had the impression that R. knew what kind of sensation or activity she needed.   As she gets older she is even better at knowing what she needs, and she seems to get her fill faster.

It makes sense that she has to learn how to process all of the information that she is receiving from her body and senses. For her to be able to pay attention to anything outside of herself means that not only does she need to be able to process this information, she has to process it in such a way that it is not distracting to her.

I also think that just because she can process her sensory information better, does not mean it is easy for her.  I suspect it also is probably not exactly the same for her all the time.  Some days things bother her more than others.

When we were on a general school tour the principal told us that we would be entering several classrooms in progress.  She instructed us to go all the way to the back of the room, so we would be out of the way.   I’ll admit my elementary school experience is decades old, but I could not figure out at first glance where the back of the room was.  The desks were set in tables, none facing in one direction.  The kids were sitting in groups all over the room, facing different directions.   I wasn’t alone in my confusion.  After the first classroom I went to the back of the line, so I could follow everyone else, and the same thing happened in every classroom.  Whoever was first just stood there, not sure what to do.

Maybe that is how R. sees the world, it is just a jumble of information that she has to find some way to understand.

As a parent I have to keep learning how to accommodate and encourage what she needs.   I can try to prepare her for new situations or offer familiar supports.

I also need to manage my own feelings about the behaviors.  I really should not get annoyed that she is running around dumping all her toys out.  I should realize that she needs some physical activity throughout the day, and if I don’t help her find something to do, she will decide for herself and I might not like it.

One of the hardest parts is being able to interpret R.’s behaviors and help her learn to communicate exactly what she wants.  Putting her fingers in her ears never means that she wants to leave.  Even crying doesn’t always mean that she wants to leave.

We went to a birthday party at Lemos Farm.   She cried on and off for half an hour, every time she cried we would be ready to leave.   We were just about to say good bye when she hopped out of the stroller and started playing.  She had a great time and played for over an hour.   I’m so glad that we waited.

It is hard to know what to do to help R., how to react to her sensory needs.   It would be nice if there was a specific solution to sensory issues.  A special swing or apparatus we could all sit in and magically get over ourselves and pay attention.   But that’s not how it works.  Maybe I should take comfort in knowing that there is nothing that I have missed, no secret technique.

The many gifts of the ipad

There are so many things that R. has learned that can at least be partially attributed to the ipad.

She started to point purposefully after she learned to use it.  I’m sure the ipad is not the sole reason, but it seems to have helped.

Her receptive language has increased and it seems like she is picking up words (especially labels) faster and with less trouble generalizing.   I know that school and the techniques the ABA therapists are using deserve the most credit.  But I also know that the ipad is helping to reinforce these words -pun intended.

I think it also has helped with her auditory processing, she is pronouncing some words better.  I suspect it is because of apps like Bob Books, where she can hear the phonetic letter sound as many times as she wants.  She is touching the letter, seeing it and hearing a sound.

I have posted about how her youtube video selections seem to mirror what is happening in her life.   She will finish with her ABA session where they were working on the prepositions on top and under and go to youtube on the ipad and find Sesame Street videos that are teaching the same concepts.

She has stopped playing with her spit on the window (big hooray for that one!).  I really think it is because she can get that same sensation from the ipad.

She is writing letters, numbers and shapes.  She asks me to show her how to draw things -shapes and letters.   Of course they do this in school, and I give her teacher plenty of credit for helping to teach her these skills.  But I think that the ipad helped her focus in a way she could not before, and those positive experiences give her confidence and motivation.

She doesn’t have to to it all the time, but she will share the ipad with a friend, and even negotiate turn taking.   I never thought about the ipad as something that she could do with a peer, silly me.  They seem to do it themselves quite naturally.

 

A glimpse at how she sees the world

R has been playing with the camera on the ipad and she takes some strange and interesting pictures.

The beauty of a chair button

She has learned how to use the different effects too.

One basket becomes two

Daddy times two

She is also taking self portraits.

Giving thanks

I was going to write about all the things that R. has learned this year.  And about how thankful I am that she has progressed.

But then I felt kind of weird about that, guilty even.  My feelings for her aren’t based on what she learns or does, I would not want her to think that at all.

We were at a birthday party recently and there were two small babies there.  On the way home I asked E. if he could remember what it was like when R. was so small.   He said he did, but that he thought she was so much more fun now.

This year I am thankful that R. really seems to be enjoying her life.  Even the simple things like a trip to the playground or a donut makes her just gleeful.

Her joyfulness is contagious.  She can put a whole new life and meaning into the word Yay.

Noisy feet, happy kid

We went to the zoo over the weekend.  It has been a few weeks since we last visited.  R. was really excited and wanted to get out of the stroller almost immediately, which is rare.

She walked the entire length of the zoo.  She was running, skipping, prancing and doing this stimmy feet dragging thing she does.   It was bugging me because she was getting out of control and prone to tripping often.  Which is not the end of the world, but the concrete at the zoo is particularly good at ripping jeans.

After I told her many times to slow down and walk nicely she looked at me and said No, no no and pinched my mouth.

I realized that I was annoying her as much as she was annoying me.  I also realized that I was trying to get her to act normal.

So I found places where she could run.  But when we were walking around the zoo looking at the exhibits l insisted she go slowly but let her skip and shuffle to her heart’s content.

She was so happy, she smiled and laughed and talked (some of which I actually understood) and had a great time.

I read this post Quiet Hands today.   Our ABA therapists don’t use those terms.   But it made me think that I need to consider what it is that I am asking R. to do or not to do.  As a parent sometimes it is hard to know when to draw the line.   I’m so grateful that she is starting to tell me in her own way when I’m being controlling.

The Enrollment Fair

Now that the IEP is completed I have to get serious about touring more schools.

Here in San Francisco the IEP team only determines the service model – what type of class that you can list on the enrollment application.  The actual school placement decision is done via a lottery.

The content coordinator suggested that we list as many schools as possible.  I thought that seven was the limit, but this year there are spaces for ten schools, and an extra form to use to list more than that.  There aren’t that many schools that are going to be appropriate.  I’m going to have to look at schools that are further away than I was hoping for, but still within the city.

I went to the annual enrollment fair.   It was held in the concourse building where they hold trade shows.  All the schools in the city had tables.  Each school had the principal and parent volunteers there.

It was incredibly crowded.  Like shoulder to shoulder, only the pushy ones get through kind of jam packed.  The consensus among the other Special Ed Moms I know is that the whole event was drink inducing.

I kind of forget that all parents have some stress about kindergarten.  And because our city’s process seems to be designed to be chaotic, I think parents here (and likely in other cities with lottery systems) have a level of additional stress.

I attended a workshop for enrolling in special ed and it was some what informative.  The district as a whole is trying to move from a programs model to a service delivery model.  (Way to be late to the IDEA party!).  Which is good, but it is clear that they don’t know exactly what to do.

They included the special ed enrollment information in the general enrollment guidebook.  Previously it has been a separate document.  It does send a better message to have all the information together.  But the information that is there is still lacking.

I asked how the lottery actually worked for SDC (Special Day Class) students.  All other students have the same lottery process, with a few tie-breakers to give some students preferential enrollment.   They said that the process and tie-breakers are now the same for SDC students.  That doesn’t really help us, we don’t qualify for any of them.

I also asked where we can get actual enrollment data, like is available for the general ed students.  They said that we could go to the educational placement center.  I’ll be going there soon.

I visited a few school’s tables.   Only one school had anything about special ed prominently displayed.  It was a poster with pictures of students from their SDC class with their new ipads!

I was directed to speak with the principal about SDC classes at every table.  Once I told them my interests, a few just kind of said Yes, we have an SDC class.   It was like pulling teeth to get any specifics.   Two principals in particular did seem well informed and had a lot to say, one even had the school’s speech therapist on hand.   I could just tell the difference between principals who considered the SDC classes part of their community from their attitudes.

The Placement IEP meeting

We had our annual IEP yesterday.   We got the biggest compliment from the teacher and content coordinator – they said we were so calm during the meeting.

Of course I was nervous about the whole thing, but I will admit that by the time the meeting rolled around I was feeling at peace because I felt that I knew what to ask for.  I think that is the hardest thing about planning R.’s education, I have no experience or even a point of reference.

But over the last couple of months I realized that I do know R. better than anyone and my instincts are usually correct.  I’ve certainly always known and tried to act as though I was in charge.  But I think with this whole kindergarten process I had to remind myself.

A few days prior to the meeting I emailed the teacher a list of our concerns, the goals we wanted to add or change and our thoughts about kindergarten transition and placement.

I know that some parents warn against doing this, because it can give the school department time to prepare their arguments.  But in our case I think it only helped.  The teacher shared the email with the rest of the team as I hoped she would.  We were able to get the the process of the meeting faster because everyone knew what we wanted to talk about.

I also gave the teacher permission to prepare a draft IEP based on the email.   This also helped the meeting move smoothly.  She actually gave me all the goals we wanted, and in some cases used my exact wording.

This was the most positive meeting yet.

They said she can sit at a TEACCH station and do work for 15 minutes!   This is the child who could barely sit down when she started preschool.

The ST finally acknowledged that she is using 1-2 words consistently to communicate and increased her goal to 3 word utterances.

They also said she is playing appropriately with many toys and does pretend play on her own.   They added the goals I wanted about engaging with peers on the playground.

She can trace her name and letters and numbers, she is writing some letters on her own and can copy when the teacher writes on the board.

She is not putting her fingers in her ears as often.  I made them all acknowledge that they are aware that if she has her fingers in her ears it does not mean lack of attention.

R. is participating more in circle time.  Every day they sing “We all go traveling by.”  The teacher has vehicle cut outs that she uses for choices.  She asks R. do you want the yellow bus or red car?   R. said pink bike!  (which is one of the other choices)

They all said she is being mischievous.  If they open the toy closet she will run over, knock some over and laugh.   She will pick up the toys or whatever when they tell her to.   I’m happy that they see this as a good sign developmentally and not a hassle.

They wrote this:
R. is intelligent and curious.  She likes to seek out new way things work, and watches intently when you show her how something works.

Originally they did not plan to have a general ed teacher at our IEP meeting.   The CA law says that a general ed teacher has to be at an IEP meeting if any aspect of being included in the general ed class is to be discussed.  I wrote them, mentioning what I wanted to discuss, how a general ed teacher has been at all of her annual IEPs so far, and mentioning the law.    I offered to change the date of the meeting, and offered my consent for the general ed teacher to only attend part of the meeting as long as the topic she needed to discuss was addressed.

So we had a general ed teacher at the meeting.  Her time was limited so we discussed things out of order.    I asked for R. to be included for a short time in the general ed preschool (at her school location).

I also planned to ask for mainstreaming in kindergarten, but they put off all discussion of services relating to kindergarten until the transition IEP in April.  I suspected they might do this, but it was worth asking.

They were supportive of having R. go into the general ed preschool, and we had a good discussion about what would work best with scheduling and R. herself.   They suggested during free time, so R. could go and be confident doing puzzles or playing with toys.  She will have an aide with her.  It seems like they are encouraging the aides to be as hands off as possible, if she is working on her own the aide will go help other students.  I like that they are doing it this way, because R. could be interested in only interacting with the aide, and she can be prompt dependent.

I had to give permission for her to miss some of recess.  She has a long recess and we are going to start with just ten minutes, so I think that will be fine.

We all agreed that the SI (Severely Impacted) classes were the best fit because of small class size, structure and ABA style teaching.

They said that we can change the class type at any IEP meeting.   Even if we have a placement, we could change our minds in April.   I’m sure it is more difficult than they make it out to be, but it is good to know that they don’t consider anything permanent.

App review: Bob Books #1 Reading Magic

R. has been really into this Bob Books #1 Reading Magic app.  The app includes 32 words in twelve scenes.

So it starts like this, with a black and white picture and gray words. If you don’t do anything it makes a little sound and the images move to get your attention.

Touching Sam brings you to this page, where you can match letters to spell the word.  I have it set for Level 1 and to say the letters phonetically.  Each time a letter or the box where the letter goes is touched the app speaks the letter.

After the word is spelled, the item changes to color.

You are taken back to the first page with the phrase on it, and the drawing of Sam is colored in, and the word Sam is black.  The cat drawing is black and white, and the word cat is gray.  The cat will make a little sound and move if you do not select it right away.

Then you can spell cat, just like the previous word.


The cat turns to color after the word is spelled.

When the entire phrase has been spelled, the picture changes to color, the entire phrase turns black and the figures move a little.

There are 4 levels of play.  We are using Level 1-Drag and drop letters to match.  Level 2 is learn left to right order.  Level 3 is spell without visual hints.  Level 4 is Pick letters to spell words.

There is the option to turn on and off the background music and sound effects.  You can turn on and off the options for the objects to wiggle to give hints.  You can also choose to have the app speak the letter names or phonic sounds.

I was surprised at how much R. likes this app.  I thought the pictures might be too simple, but she plays it all the time on her own.  I don’t understand using names like Dot or Mat in phrases.  But I do know these Bob Books predate the ipad.