My new moves

I mentioned that we were walking a lot in the community in my last post.  What I didn’t mention is that she does still have some behaviors, they are just a little different. She will tug on our hands to pull in the direction she wants to go. She will point sometimes and look at us with an expression that is demanding. I’ll prompt her to say go this way or something relevant.

She doesn’t like to wait, or stand for a long time while I look at something.  I do honor that for the most part, but if I really need to do something she has to wait.

When she gets upset she will throw herself onto the ground (usually to her knees at first) and cry. Sometimes I have no idea what sets her off, but usually it is some change to the way we are doing things or something she perceives as a change. Like parking in a different spot. At one Target entrance there is a separate entrance and exit. She thinks we should always walk out the same door we came in.

I always wished she could tell me what she wanted in the store, well there’s a case of be careful what you wish for. She can remember where the stuffed animals are in any store and find her way there. We were shocked to realize she could find her way to the Disney store (she led us) from any spot in the Serramonte mall. (a large mall shaped like a cross). She had only been there walking around one time before like a month ago.

In the Disney store she is after a plush Kermit. It is tempting to buy her everything she wants but if I do that I am setting up an expensive precedent. So I don’t buy her anything. I tell her we can say hi to Kermit (or whoever) talk to him for a minute and they we have to say good-bye. This works, but it takes a lot of urging.

She is incredibly strong. At this point she is more than half my height. If she pulls or pushes me and I am off balance she could theoretically knock me over. Sometimes I have felt afraid that I could not control her, that she would run into a dangerous situation or…

So I invented a procedure for myself to restrain her. Now that sounds terrible, but sometimes I do have to take control.  She’ll flop down in the middle of the street or a busy area where I can’t protect her until she is finished.

When we walk she usually stands on my left, with her right hand in my left hand. If she suddenly flops down to the ground, it is not easy to pull her up by my left hand, and I’m always afraid I’ll hurt her. So first I’ll say Up 1,2,3. Sometimes that works and we proceed.

If that doesn’t work, I will transfer her right hand to my right hand and slip my left arm around her back and put my hand under her arm pit. Then I have enough leverage to lift her up.  That often calms her and we can proceed. It is also easy to switch to that two armed position while we are walking if she needs extra direction.

If that doesn’t work, I can slip my left hand further around her so it is in front of her, like a bear hug from the back.  It’s tough to move in that position and it is easy for her to kick me, but it does work.

I took R. to the post office to mail a box. I probably should have gone at a time when I could go without her, but I had to pick up something anyway. So I got the stroller out, and put my box in the stroller. R. cried instantly, not sure about the box, the stroller (we haven’t been using it) or what we were doing.

I got her to help me push the stroller, and we made it up the hill to the Post Office with no problem. As I turned to enter the Post Office she started to cry and flopped on the ground. I pushed the stroller so it would not roll down the hill and did my “moves” on R.

A woman came along, and I’m sure to her it looked like I was totally out of control of the situation. She pushed my stroller out of arm’s reach (grrr!) and then got in R.’s face to try to help. Which of course made the situation worse.

I finally said, she has autism, she is upset because this is a new experience, I’ve got it under control, thank you. The woman moved away and I wrestled R. and the stroller into the Post Office.

As soon as we were inside the building, she stopped crying and said I want iphone.

Behavior is back in town

I kind of knew that when they said she had no behavior issues at our IEP meeting last month that it was just a matter of time.  Now we have some new behavior issues.

Just last week she started to hit E. and I when we tell her to stop doing something.  Sometimes she will say R. no in a snotty voice and then she will try to hit us in the face.

She is really insistent about it too.  When I stop her from hitting me, she will get really mad and cry and follow me around until she can get in a smack.  She wants to hit our faces, she is tall enough that she can just about reach mine, but she has to pull E. down to reach his face.

She did it for the first time in school, she smacked an aide in the face.  Of course it had to happen during the time she was mainstreamed.  The teacher said that it has been going perfectly up until today.

She has also been running away at school.  Once she ran off when they were walking from the bus, and she ran from the cafeteria towards the SDC Kindergarten class.  The teacher said she got a look in there (it is right across from her classroom) and has been obsessed with gaining access since.

We discussed it with the behaviorist.   Regarding the hitting, we are going to make sure that we stop her before she hits us.  We will try not to use words like no or don’t, and phrase our requests in a positive way.   We are also going to say nothing when she is trying to hit us, so it does not become a power struggle.

They are going to work on teaching her to respond to the word stop, which I know she can do, just not consistently.   I asked if she could have a chance to explore the kindergarden class, to just get it out of her system.  She is very curious about new things.   They are also going to work on having her ask to leave the group.

R. was really prickly last week, and still is but not as much this week.  I was wondering if she was getting sick or if there was some cause for the changes.  This all started last week.

I also wondered if it is a developmental thing.  Maybe she is just becoming really aware that we are telling her what to do, even nagging from her perspective.   There was a time when she did not listen at all because she did not have the receptive language.  When she had the receptive language she began to follow instructions.  Maybe now that she has been doing that a while she is thinking about it more.

I know that hitting is not appropriate behavior, but I can’t help but be amused at her reaction after the fact.

I think that the running away at school is similar.  I’ve noticed when we go to the zoo recently that R. really seems to know her way around and she is asking to explore areas we have not seen.   (Usually because there is no stroller access, and she is walking holding my hand).

Maybe she never really noticed there was a classroom across the hall, or had the ability to think about how to get there when she was in another part of the building.

I certainly hope this is just a phase.

A letter to NT Parents

I wrote this about a year ago.  I didn’t post it here before because I thought it sounded more crabby than I intended.   For autism awareness month I dusted it off, and posted it to the Mom list that inspired it.

Dear Parents

My four year old daughter has autism.  Maybe you know us.  Even if you never meet us, considering the number of people with autism is currently 1 in 110, you will meet people with autism in your lifetime.

A while ago someone on a Mom list was concerned their child had autism.   I was kind of shocked by some of the responses.  Autism is all the rage now. Really?  Do you think it is trendy and fun to have a child who does not speak?   Is it cool to know my child may never live independently?   Do you think all the children who are being diagnosed are undeserving of the services to help them?

Someone else said  Your child doesn’t have autism – he’s great! I get that you probably do think a child with autism is quite awful.   But I feel the need to tell you that I think my child is great.  Better than great actually, but I’ll spare you my gushing.

My daughter is a person, she has likes and dislikes and she also has real challenges with communication.   Sometimes she is overwhelmed by sounds and sights around her.  I do my best to keep her away from stressful situations, but I do feel like it is important for her to be able to go out into the community.   If she screams or has a meltdown I will leave with her.  But every once in a while I really need to buy milk or something that can’t wait .   Yes I know she is loud.  Please have a little patience.

You may tell me that only babies have tantrums like my daughter, and if I would just discipline her she would behave.   I don’t expect you to understand that she has had years of behavior therapy.   But I hope that you can understand that part of having autism is immature development.   In many ways, she is like a baby or a toddler in terms of her ability to communicate.

Please don’t get in my daughter’s face while she is in the stroller and tell her she is too big and too old to be in a stroller.   Not that it matters, but she’s not seven like you think.   I’m sorry your world-view is so narrow that the sight of a large child in a stroller offends you.  But it is not my problem, please deal with it on your own time.

I’m going to take my daughter to the playground, and she is not going to act like your children.   When my daughter sees your son playing with a bouncy ball, she wants to play with the ball and with him, but she doesn’t know how to ask.  She will take the ball from him as her way of asking.  I’ll be right there with her, and I’ll tell her the ball is not hers, and I’ll make her throw or roll the ball back to your son.   I’ll admit it must look strange to you, that my child can’t do something so simple as say play with me, and that I have to be so involved with her.  In my fantasies (which occasionally come true) your son would play with my daughter.  Just pass the ball back and forth a few times.  It is a public playground after all.  It is your son’s choice, and if he doesn’t want to play with my daughter, that is fine.     But please don’t give us dirty looks, drag him and your other children away, and tell them they have to stay on the opposite side of the playground from us.   You are teaching your child that it is okay to be rude to people who are different and also that they should be ignored.

My daughter enjoys watching your daughter and her friends climbing on the equipment and hanging upside down.  She also likes it when your son brings his remote control helicopter to the playground to fly.  I know she looks a little strange, her body quivers with excitement and sometimes she’ll jump up and down clapping and and saying yay.   The kids don’t mind the attention, and I keep her safely out of harms way.   Please just let her watch.

I’m not looking for pity or sympathy.  But I do hope for a little patience and understanding.   You will meet people with autism, they will be your child’s classmates and your neighbors.  Autism is not contagious, in fact studies are showing that typically developing children actually benefit from exposure to children with special needs.   I’ve seen this first hand.  It’s never to early to teach tolerance, and that is a gift that will continue to give through a person’s life.

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.

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.

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.

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.

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.

Christmas vacation is over

The bus came five minutes early this morning.  That was right on time as far as I was concerned.  R. seemed just as happy to go as I was.   I think she had a good vacation.  We had some minor meltdowns, and she’s been a little stimmy, but generally in a good mood.

We had a chance to go to a tot gym that we used to go to regularly.   She remembered as soon as we got into the parking lot and held my hand and ran into the place.   I think we probably hovered a little too closely, she did not get into much trouble at all.  She used to just run around all excited and crash into kids.  She did not crash into one person, and I even saw her stop herself so she wouldn’t knock into another child.   She spent some time following these two little girls, I’m guessing were close to her age.  They were playing with those sticks with horse heads on them, I can’t think of what they are called.  She finally worked up the courage to grab one, and as I was about to intercept one of the girls handed her one.  They had an extra.  Of course she did not know what to do with it.  But that scene could have ended with a meltdown and two girls getting bopped on the head.

She also spent quite a while in the bouncy house.  A few small boys were in there.  One of them kept knocking all the other kids over, R. included.  She thought this was hilarious, and let him knock her over many times.  She also let a small boy, probably under two crawl all over her.   Part of me kind of hates those bouncy houses.  I never know what is going to happen, and it’s not easy to go in there after her.   She really likes them, and she’s starting to learn to get out of the way so it is easier.

I got my fill of bouncy houses, we also went to a party playhouse which is basically a giant bouncy house with several levels,  slides and ball pits.   She played for a while, but then wanted a drink and had a meltdown when she could not bring her cup into the play area.  She let me put her shoes on and was fine once we got to the car.  It was getting really crowded, so I’m sure she was overstimulated.

Encouraging Communication-What’s working Part 1

Find an alternative communication method.
We used PECS (Picture Exchange Communication System) with R.  We were fortunate that our ABA provider made all the icons and set up the binders.  We used a combination of the standard icons and actual photographs.  We started hand over hand and offered preferred items.    In the beginning the therapists would put her trampoline against the wall and she would have to hand over the icon for the trampoline to get them to put it down so she could play with it.   We keep two PECS books around the house,  one for food and the other for activities.  R. does not use them as much as she used to, I think she really understands it is easier to be prompted to say the word than retrieve the icon, but she will occasionally go back to them and bring us one of the cards.

Sign language is another option.  R. did not have the imitation skills when we began, so this really was not a good fit for us.  I have met other children with ASD who are as adept with signing as R. is with PECS.  One advantage to signing is that you don’t have to bring your PECS book everywhere and keep track of all of those icons.

Our former program director would talk about PECS enabling R. to learn the power of communication. It really is not possible to physically prompt a child to speak, but both of these methods can be physically prompted.  The advantage of being able to physically prompt the correct response, in ABA speak is errorless learning.  The prompt level will be gradually decreased.  When R. started using PECS the prompt was to hand over hand help her remove the icon and hand it over.   After a while the only prompt she needed was for us to show her the PECS book.

Several family members asked me if R.’s using PECS was going to delay her ability to speak.  They were concerned that it appeared easy for her, and she would become reliant upon the method.  I think PECS is what enabled R. to get to the point she is now with speaking.   She was not at the developmental point to be able to access language, but she was able to be taught how to communicate.  NT infants and toddlers in the pre-verbal stage are becoming experts at non-verbal communication,  R. needed to develop these skills before she could speak.  PECS enabled her to have the benefit of being able to communicate at her developmental level.

The ipad and other devices will be opening up new worlds in alternative communication for children on the spectrum.

Don’t reward crying/tantrums

Crying and tantrums are a form of communication.   They were R.’s main method when we started on this journey.  ABA was very helpful in teaching me that I should not give her what she wants when she cries, I should prompt her to communicate her wants.  I wrote about this a few months ago. I’ve read discussions on different ASD boards that describe this method as not acknowledging or ignoring crying/tantrums, and I think this is an incorrect interpretation.   Crying should be acknowledged for what it is, a complaint.  The message I want to send R. is that, I hear you, you are upset, but if you want whatever it is you have to say a word or give me an icon.  Crying may get my attention, but only communication is going to get you what you want.
At this point I can usually prompt R. to say a word if she is crying for something she wants.  This actually happens rarely, because most of the time she will start with a gestural communication (hand leading) and then will either say or be prompted to say what she wants.  But sometimes she can’t have what she wants, or she has to wait and then she will cry.  This is probably more accurately described as a complaint, she usually has no tears and there is babble and sometimes words among the yells.  I also try to explain why she can’t have what she wants and offer an alternative.  So if she’s crying because she’s impatient for the popcorn to finish in the microwave, I can show her the bag that is popping, the countdown timer and say we have to wait.   It’s always harder if it is something she can’t have, but it is getting so much better.  So if she is crying because she wants to go outside, I can tell her it is too late to go out and offer something else to do.  I’m still in awe every time this works.

Consider that communication is more than just words.
Shortly after we started ABA, R. began hand leading.  I realize now this is quite common among children with ASD.  At the time it seemed quite amazing, and now it is so much a part of how she communicates.  Prior to any gestural communication it seemed her only method of communicating was by crying or with a look or expression .   The first programs that ABA started with were what they called anticipation games.  They would do something she liked – tickles, spins, bubbles… and then wait for her to look at them to repeat it.    It wasn’t long before she would gesture by grabbing their hand to continue the activity.     These play activities taught R. that people could do fun things if she communicated.

In the book The Special Needs Child by Dr. Stanley Greenspan, he writes about closing circles of communication.   If I tickle her and she looked at me to continue, that would be one circle of communication.  I really liked this concept because it gave me a sense of actually doing something using skills she already had.    It still feels like a game to see if I can get her to close just another circle or two.   Floortime lite Mama writes about Floortime as a lifestyle, and that is how we do things around here.