True confessions from an autism Mom

A friend mentioned to me that one of the advantages to having a child with autism who is limited in verbal skills is that we don’t have to listen to endless pleas for princess toys or whatever the fad of the moment is.   I have to agree with her.

Sometimes I do wish that R. would tell me a toy that she wants, but it is nice that I can wheel her through the toy department and let her play with a couple of things, and often she will become bored with every one except the cheapest plastic animal.   (I do avoid the Sesame Street toys, those she could not resist).

She is getting better about waiting, and rarely screams when we are in a checkout line.  It does help that I always bring snacks.  But sometimes something will set her off and she will start yelling. It is amazing how much faster that line moves when R. is screaming at the top of her lungs.   Every once in a while,  I wish I were mean enough to make her scream on purpose.   Like when we were in line three people behind the lady who insisted that the cashier un-bag and rescan all of her bags of groceries, I could have wrestled Elmo and Ernie from R.’s hands  just to make her yell.

I’ll also confess that I’m really starting to love it when I hear other kids scream in public.  Not little babies, that doesn’t do it for me.  It is the toddlers, preschoolers even elementary school age kids.  I swear lately, I have to really control myself not to grin like an idiot.

I’ve written about how R. needs to see something before she really understands that it is possible.  I will admit that I use this to my advantage.  I’ve never shown her videos or anything entertaining to her on my laptop, so she seems to think only E’s computer has access to fun.    She never has any interest in my purse because she doesn’t think there is anything in there that she wants.  I always carry a separate bag for her snacks.

What to wear

R. is big for her age, she’ll be four at the end of the month and I’m starting to buy size six clothes, especially tops.   It is kind of hard to find clothes in this size.   I don’t know if they get purchased quickly or the stores don’t stock as much in those sizes.  Some stores like JC Penney and Macy’s have a department that is 4-6X.   I would like to know what that 6X means.   Most stores like Target or the Children’s place start at size 4 or 5 and go up as high as size 14.

It seems to me like the clothes are more suited for an older girl.  Tops with sequins, buttons and ruffles are totally inappropriate.  All those ruffles will just get covered in paint at school anyway.   I’d rather not have buttons or sequins,  who knows if she will start chewing on them or pulling them.   I would also prefer not to have shirts that are low cut or sleeveless.  We never have an occasion to wear a sleeveless shirt in San Francisco.  I could do without skinny jeans or jeggings.  They do look very cute on, especially if you are a skinny almost four year old.  But they are a pain to get on and off, those tight ankles require too much effort.

What bothers me the most are the words and sayings on girls’ shirts.  I don’t want to buy a shirt that mentions anything about princesses, love, or being spoiled.   I will confess that E. bought her a shirt that says -sorry boys I only date rock stars.  He was so pleased with himself, I was horrified.  I’m so glad she has outgrown that shirt.   I saw a shirt that said talks too much.   Part of me wants to have one made that says doesn’t talk nearly enough.

I think I’m lucky that she is not very picky about her clothes.  Her clothes, even the few dressy items are all very comfortable.  I don’t make her wear lacy dresses and she has never even had a pair of tights.   She is however picky about shoes.  All the other kids in her class are wearing crocs and Stride Rites and cute shoes.  She will only wear these boring shoes from Payless. Thankfully they seem to make them in every size.  I think she will be wearing them in high school.   I’ll admit I’d love to get her to wear cute girly shoes, but I would settle for some kind of sandal or summer slip on.

Reading some autism fiction this time

Mockingbird – Katherine Erksine

This book is actually a young adult book.  One of E.’s friends is now working at our local library.  It’s like having my own personal librarian, and he suggested this book.

This story is told from the point of view of Caitlin, a ten year old girl with Aspergers Syndrome.   She’s in the fifth grade, in a fully included class.  Her brother was recently killed in a school shooting at the town’s middle school.  She lives with her widowed father.  The tragedy plays a big part in the story.   Caitlin’s brother was an important mentor for her, teaching her many things about how to interact with the world.  The book is about how Caitlin learns to deal with the loss of her brother and learn about emotions in the process.

The author does a great job of describing how Caitlin interprets the world.  The book starts with her remembering what she calls YOUR MANNERS, and getting a sticker on her chart towards the opportunity to watch a video.   It is clear she doesn’t understand the reason for saying thank you or whatever, she has just memorized the correct responses and has a desire to please to obtain her reward.

Caitlin gets pulled out of class to have time with what I assume is a Special Ed Teacher or inclusion specialist.  This teacher suggests that Caitlin take recess with the younger kids.   She ends up befriending a first grader, and he helps her to understand that YOUR MANNERS are actually her manners.  She uses the phrase MY MANNERS.  It was really interesting reading about her coming to understand this, and developing a friendship with the younger boy.   I’m not sure how realistic the depiction of her peers coming to treat her better is, but it was heartwarming.

I’m a total wimp when it comes to fiction that is sad, so this obviously colors my opinion.  I thought that the background of the tragedy almost took away from the message of the book.   Does a young person with Aspergers Syndrome have to experience such an tremendous loss to be able to develop a better understanding of emotions?   I do get that books about school shootings have a place, I just think I would have preferred the topics be dealt with separately.

Be sure to have a box of Kleenex handy if you read this.

January ABA team meeting

We had our monthly meeting today with the ABA team.  One of my concerns is that R. is over generalizing the mand, want book.  She is saying want book for nearly everything she wants.   The supervisor thought that this was typical for R, and she’s right. R. does have a tendency to over generalize specific mands when they are first learned.  She also said that they are working on an object identification program that will help R. increase her vocabulary, and this should help.

R. will come to me and say want book, while she hand leads me to what she wants, which is rarely a book.  If she wants a cookie, I’ll say want cookie and she will only repeat the word cookie.  I know it is common for children with autism to repeat just the last word.  I do find I can get R. to repeat two word requests when they don’t contain the word want.

We discussed this for quite a while.   They suggested that when she says want book, we should give her a book, even if we know that is not what she wants.  Then when she refuses the book we should prompt her to say the correct mand.  We decided that we should limit our use of want, okay I pushed for this, but it wasn’t hard to get them to agree.    So instead of want cookie, I’ll say eat cookie, instead of want water I’ll say drink water, instead of want open, I’ll say open door.    They modified their mand program so they will work on eat cookie, play ball and want doll.

R. has started saying Hi spontaneously, mostly to inanimate objects.    She was cold so I put a sweater on her, she looked at it and said Hi, with the most joyous, glad to see you tone.  She said Hi to the water in her shower, to the box of cookies, to the new straw I put in her cup, always with that pleased as can be tone in her voice.   The behaviorist and supervisor thought this was a little weird, but cute.  The therapists said they thought it was typical behavior for  an early talker.

They are increasing R.’s sitting on the toilet to twenty seconds, up from ten seconds this week and last.  Her pants are still on while she is sitting.  We discussed the fact that she needs to sit for the entire twenty seconds with out any prompting.  They are giving her a reinforcer after sitting, and they wondered if they should give her the reinforcer while sitting.  I said that I would like to keep reinforcing her after sitting, until we get to her sitting with her pants down.   Then when we switch to pulling her pants down, she’ll also have the addition of a reinforcer while she is sitting.  They agreed.

R. has been doing jigsaw puzzles with the image on the background, so it is really matching.  They are going to start doing the same puzzles without the background.  I’ve been doing a jigsaw puzzle with her lately with no background, and she is starting to get it.   I think she has memorized the picture, but that is okay, at least she finds it interesting.   She’s bored with her insert puzzles, so I’m looking for other activities like that.  It’s like it needs to be a little challenging, but not too easy or difficult.

They are working on a new tracing program.  R. is supposed to trace a dotted horizontal line.  She needs a little bit of a prompt but she seems to like doing this.   I know she likes to have me hold her hand and we do dot to dots or write the alphabet.  The behaviorist wants me to stop doing that until she gets further along in this program.   It bugs me a little, but I do get where she is coming from.  We’ll do more coloring.

I finally asked about being provided a list, even a short one of activities that we could do with R. on days off and sick days.  She seems to be bored and looking for more to do on those days.   They said they could give me a list of the programs that were on maintenance, and seemed to think it was a good suggestion.

One of our therapists is leaving, Friday is his last day.   It happens all the time, but it always makes me a little sad, and he says he is too.  R. really loves him, I hear them both laughing throughout their sessions.

Writing the Family Rule Book – Rule #1

I keep getting annoyed at E. because he won’t follow what I consider to be a simple rule for disciplining and communicating with R.  He told me to write a rule book, so here goes.

When giving R. an instruction, (An instruction is any time you are telling R. to do something, whether it is regarding misbehavior or not.  Sit down, come here, put down, are examples) only repeat the request twice.  After the first request, if she is not complying, move towards her, and repeat the request a second time when you are a hands reach away, if she does not comply after the second request, physically force her to comply.

So it looks like this:

R. is jumping on the couch.
I say Sit down, wait a second or two and move towards her.
She continues jumping.
I’m standing in front of her and I repeat Sit down and physically sit her down.

I’ve been using this method since R. was 18 months old, before we knew about the autism.  A Mom in my typical Moms group suggested it because she was tired of yelling all day.  In the beginning I was careful to use commands that told R. what she should do – sit down as opposed to what not to do – stop jumping.  It doesn’t matter as much any more, she seems to understand.  But what is the best part, is when I use this method I almost never have to say the request twice.  As soon as she sees me moving towards her, she will usually comply.  She does test me a lot, she’ll wait until my back is turned and start jumping again.  But that kind of testing seems like a good thing to see in a child with autism, so I try to be patient.

This can be an annoying method, because it means I have to stop what I’m doing to follow through.  I have to be consistent, especially regarding discipline.  But it is really worth it, she listens to me and to her teachers.  She also listens to E., but she would listen even better if he would be consistent about forcing her to comply.

I don’t mean to imply that E. is not cooperative in general about working with R.  I think that it has become one of my pet peeves to hear someone repeat things endlessly to her.

Gearing up for the annual IEP meeting

I confirmed the date for R’s annual IEP meeting.  We had an addendum IEP in October,  but this will be the first IEP with all of the current team present.  At next year’s  annual IEP meeting the decision will be made regarding kindergarten placement.  I feel kind of pressured to make sure that as many skills that she could possibly attain in regards to that transition are included now as opposed to then.

R.’s teacher and the general education preschool teacher have made changes to add mainstreaming and reverse mainstreaming opportunities during specific parts of the school day.  They are already integrated for all of their recess time.   Currently on her IEP, in the notes section, detailing the placement, it says there are opportunities for mainstreaming and reverse mainstreaming per teacher discretion.  I’m thinking of adding a specific goal related to mainstreaming, but I haven’t converted my thoughts into IEP-speak yet.

One of the things I’m learning from the classes I am taking is how to look at goals and see if they are attainable and measurable.  There’s a goal on R.’s IEP, under Developmental Skills R. will initiate with familiar adults or peers using appropriate eye gaze, body position, gestures or words as implemented by the Special education teacher, SPED staff, parents. It seems to me now, that initiating with adults and initiating with peers should be two separate goals.  The way the goal reads now, they may tell me that she has made 50% progress on this goal, meaning that 5 out of 10 times she initiated with an adult or a peer.  I know she initiates with adults at school and home, but with peers she rarely does so. If they are two separate goals the team will have to address and track her initiating with adults and peers separately.   She will have twice the programming and I’ll get twice the data.

Many of the goals in the Developmental Skills section are really pre-learning skills.  I’m sure she hasn’t mastered all of them, but I know from conversations with R.’s teacher that she is in agreement that we will be adding actual educational goals.   I would like to add a goal to this section about waiting.  I do realize that goals need to be individual, but I found this goal on the internet to at least get the idea started.   Will be able to follow an adult’s request to wait for her turn given materials to manipulate during the waiting period for two minutes. I’d also like to add a goal about playing with toys appropriately, and possibly a second one relating to playground equipment.

I’m searching for a book on this topic, suggestions are welcome.  But for now I found a simple article that outlines preschool IEP goals that is helpful.  I’m sure that I will be writing more about this.

Maybe she has x-ray vision

We went to a pediatric opthamologist a few weeks ago.   R. has one eye that wanders sometimes, especially when she is tired.   It took a few months to get the appointment.  I was seeing the eye wandering less by the time we finally went.

It was not a fun experience, but it wasn’t as torturous as I imagined.  We were there for close to two hours, and probably spent twenty minutes with the doctor, and they weren’t continuous.    All my special needs Mom friends locally had gone to this doctor.  But I was a little worried when the doctor started by asking R. all these questions, showing her pictures and waiting for a response.   Once I set her straight and R. demonstrated her sonic screaming ability,  the doctor agreed to do the exam with R. in her stroller, and that made things much easier.   The doctor said she could spend some time playing with R. and try to see what she needed to that way or we could hold her down and it would be over in a minute.  We opted to hold her down.

Both E and I wear glasses.  I started wearing them when I was six.  I expected to leave that appointment with a prescription for glasses for R.  I even asked the behaviorist if she could write us a behavior plan for wearing glasses.  R. won’t even wear a hat for more than a minute or two.  The doctor called R’s condition intermittent,  and just recommended a follow up appointment in six months.   So I asked her, at what age will you be able to determine she needs to wear glasses?   The doctor said she could already see that at this point R. does not need glasses.   I should do some googling, because I want to know how she can tell that by only looking at R.’s eye?   Considering her genetics, I’m sure glasses will be in R.’s future.  I’ll admit I’m relieved to not have to deal with it now.

I’ve always thought that R. has good vision.  She notices things that I don’t.   Like she will see that E. has his car keys in his hands and think it is time to go out.   Lately it is getting really hard to hide things from her.   I’m really careful not to let R. see me hide things.  No matter where I hide them, she knows they are there.  She will hand lead me to the spot and push my hand towards the cabinet or door.

I have some toys and things in a dresser so she doesn’t make a huge mess. She knows which drawer has the cds, the alphabet puzzle, the markers or whatever she wants.  And when I rearrange things, she picks it right up.   I don’t make an effort to hide what it in those drawers, it is more a matter of restricting access.  But lately she is becoming very demanding about candy (which she would not eat as recently as Halloween) and donuts (E. bought a dozen at Crispy Creme a few weeks ago, and she has been chasing the ghost ever since).   If I show her that there are none, she will be content with that.

E. bought R. a horn at the dollar store, I think it is a vuvusela.  It is loud and annoying and R. loves it. She will insist that E. blow the horn against her body over and over.    One night while she was eating dinner he hid it in the coat closet.  Not my first choice of hiding places,  I left our coats unhung most of the week so she would not see the dreaded horn.   Yes I should have moved it, but I only managed to think about it when she was around and watching.    It took a few days, but she did finally hand lead me to the coat closet and she did not seem surprised at all that it was there.

I think I may have to start digging holes in the back yard.  It works for dogs.

She sits

Last Tuesday the supervisor adjusted the potty training program again.  Instead of sitting on my lap, she had R. sit on the toilet ten times for one second.   R. fought the first few tries but by the end, she seemed resigned to do as asked.  A new, never seen Elmo potty training sticker book helped.   I should also mention that she is sitting while wearing her pants and diaper.

She did well all week, and by Friday she was laughing when the therapist sat her on the toilet, like she found the whole thing hilarious.    This week the supervisor extended the time to five seconds.  The therapist places her on the toilet, and she has to sit independently.  We count to five.   That doesn’t seem like a long time, but it is just long enough that she has to willingly decide to sit there on her own.

I’m sure we will have to start over again once her pants and diaper are actually pulled down.  But for the first time I’m actually letting myself imagine what a diaper free life might be like.

Reading material- Art as an EI Tool for Children with Autism

Thanks to the library, I recently read the book  Art as an Early Intervention Tool for Children with Autism by Nicole Martin.   Ms. Martin has a younger brother with autism.  She was trained by a behaviorist as a young adult to work with her brother.  As an adult she is an art therapist working with people on the spectrum.

The first chapter describes autism.   If you are like me and have read tons of autism books, this chapter seems unnecessary.  She does offer good descriptions of scripting (echolalia), perseverating and stimming.   I think my favorite part from this chapter is:  Children with autism hear “no” a lot from adults; helping them find ways to express and develop their talents lets them say “yes” to themselves.

She discusses how humans seem to have a natural tendency towards making art, and reasons that there is no reason to think that people with autism would be any more or less interested in art making then their typical peers.   She also mentions that symptoms of autism such as hyper focus or tactile defensiveness, can make it appear that the individual on the spectrum is not interested.

Ms. Martin outlines what she calls basic assumptions that  she writes need to be understood before using art as an intervention tool.

The adult is not “fixing” a child’s artwork, but using art to “fix” parts of the child that can be best engaged using art

The art itself (the product) is not as important as gaining the self-discovery, experimentation, tactile tolerance and so on (the process) that is required to make it.

Skills such as imagination and creativity are worth rehabilitating in children with autism.

You must believe that creativity can be learned.

The author describes “good scribbling” (focused, contemplative, experimental, sometimes even chaotic) and “bad scribbling” (symptomatic). She provides some really useful illustrations and easy to understand descriptions of children’s art development using the theories of Victor Lowenfeld and Rhoda Kellogg.

The author gives a number of good tips to help a child with autism move beyond scribbling.  She suggests reinforcing any scribbling or attempts at art work, but to give extra praise and reinforcement to attempt that are the best, or exhibit experimentation and variety.

Visual supports are also another tip- drawing a circle or line on the page can help jumpstart a drawing.  When a child puts art tools in their mouth she suggests offering an appropriate chew item. (I can attest that this works).

She also suggests that the parent (or therapist) make art along with the child.  She offers the idea of copying what the child is doing.  I found it really useful that she says the parent should attempt to draw at the child’s level, and to model appropriate scribbling and early drawing.  She mentions that a higher skill level can fascinate and frustrate a child with autism.  This reminds me of what John Holt wrote in How Children Learn, about how children lost interest in activities in which he clearly knew more then they did.

Ms. Martin lists nine autism symptoms and the corresponding artwork characteristics.  It is an interesting way to look at it.  One of the symptoms is sensory issues and the characteristics are – use of materials for self stimulation, tactile defensiveness and art material’s impact on regulation.

She also lists six major goals for children on the spectrum that can be best addressed using art.   One of them is sensory regulation and integration.  She writes Some children on the spectrum get “stuck” in the kinesthetic feeling of using art materials and are slow to move into representational work.    Her suggestions are to become aware of a child’s reactions to different textures and to take control of art activities.  She also suggests activities that create artwork using the entire body like tracing and masks.  I would have liked to read more details about how to work with this.

The author details what she calls tools of the trade, describing paints and other art materials.  And she also gives tips for providing the optimal environment for creating art, what she calls a quality art experience.  She writes An individualized directive with least invasive prompt possible is my personal rule of thumb when working with a child with ASD.  She gives a very good and detailed description of prompt hierarchy, and shows her knowlege of ABA with suggestions for problem behaviors and reinforcements.

Reference: Art as An Early Intervention Tool for Children with Autism by Nicole Martin, (Jessica Kingsley Publishers, 2009) Pages 25, 30, 31, 41, 59, 73, 113

Echolalia is kind of cool for now

R.’s talking is about the same.  We’re hearing a few more spontaneous words.  She’s saying uh oh and oh with a variety of inflections in response to things, and we’re hearing yeah and no more often.

Mostly though she is repeating what we are saying.  In a few months I may be frustrated  with this, but now I think it is quite awesome.  It means that she will say hi and bye to people if they say it first, and she’s paying attention.   I’m discovering that there are so many kinds of games to play where I get her to repeat what I’m saying.  I’ll give her stuffed animals one by one, getting her to repeat duck or whatever.  We’re actually playing with flash cards.

E. is much sillier with her and they play these games echoing babble phrases.  He touches his forehead to hers and says “bonk” and she says bonk and they play a head bopping game.  I’ve been trying to put a stop to this game, imagining her head butting one of her class mates.   But I think I end up sounding like a control freak because they are having fun.

Right before Christmas vacation the behaviorist said she was not doing as well with two word mands, they are working on want book, want ball.   She suggested I work on it over vacation.  I did and did not have much luck with any mand that started with want, she would just repeat the last word.  She would however repeat two words for requests like lights on, socks off and that kind of thing.  I also noticed that over vacation her response seemed to be a little slower, I had to work a little harder at prompting.   I was wondering if I was seeing a regression.  Monday when she came home from school she was back to responding to a verbal prompt almost instantly and it has been that way all week.   I can’t help but wonder if this is a part of having vacations or if we could be doing something else.

She also has new sounds.  Her screaming has become more dramatic.  She has this new angry, tearless scream that is so loud and high pitched, it must get the attention of all the dogs in our neighborhood.   No one told me that her voice could get louder.   She also has a new happy sound, I guess it is really a vocal stim.  She sounds like Arnold Horshack’s little sister.   She makes this sound and runs around grinning and being mischievous.