it’s not what you say or give, it’s how you say or give it
When giving “rewards” to my daughter I often say “because you_____, I can ______ “or “Sure we can_____, since you were so cooperative with______.” “Or you did what I asked and were polite, we can ______.” I catch her doing something good and use what I would do with her anyways as verbal feedback and reinforcement. It avoids praise, making a big deal, singling her out, “holding things over her head”, frustrating her about being submissive, and threats (which can occur with if /then statements). I try to be creative and occasionally throw in the “Sorry I can’t____, because you didn’t ____.” Positive feedback is 3-5 x more frequent than negative- we build up the bank. I strategize everything I say to her.
what to presume
Many advocates for autism recommend presuming intellect and that is good advice, but still doesn’t always cover the spectrum of things that should be presumed about people with autism. I think it’s just as, or more important, to presume a desire to learn, a desire to understand, a desire to communicate,a desire to love and a desire to behave and cooperate. When my daughter is given the right supports she would much prefer to learn everything she can about everything, get along with everyone, and do what she is told. She would never be oppositional just to give me trouble, she does it if she’s scared or confused. She would never refuse to learn something if it was presented at her level, modified appropriately, offered multidemenionally and in an interesting way, without already having very bad experiences with it in the past. If everyone could see the intellengent, gentle, kind, loving, cooperative child I see- or at least could presume those things in her-she would have a better chance at building relationships, learning, blossoming, and reaching her full potential.
working with the school team
meeting with school staff can be tense and I know over the years that we have had IEPs , METs, staffings and “team” meetings, that I’m often on one team and the school staff are often on the other. I understand that many characteristics of autism make it difficult for parents and staff to see eye to eye- melt downs and agitation usually make everyone tense, accusatory, defensive and frustrated.
right now, we’re in a great team and our meetings are collaborative and productive. for example:
me- belle comes home and complains about Henry (her aide one hour), she says he gets mad at her
staff – the problem is that what belle tells you at home is not what happens at school (I’ve heard that one before)
me- well, it must mean something
staff- words are behavior- is she being reinforced for complaining to you, is she getting attention?
me- hmmm, i listen, try not to react, don’t take sides, listen and use the information to help her problem solve. I try to get her to come up with ways to improve all of her relationships. Should i be ignoring her?
staff-that shouldn’t be necessary, but you can’t believe everything she says
me-maybe we could just discuss why she might possibly be saying what she says about certain staff? Words are behavior and they can also be communication.
staff- she does seem to reflect her own feelings on the staff- if she’s tired she says they are, if she’s frustrated she says they are.
me- that’s an interesting concept and helps me understand a little
staff-her complaints could also mean that the staff member is firm and consistent with her, insist that she do her work that hour before free time. Her and that particular aide actually have a lot of fun together and she is nice to him. He was able to give her a special treat today too- an invitation to see a special turtle presentation.
me- ok, so we agree that saying that she is exaggerating or trying to to attention from or manipulate me doesn’t help. She has a complaint and it might not be all facts, but it could give us some information to help us all problem solve, gain insights and teach her coping mechanisms- right?
staff- yes
me- ok, that helps a lot. thanks!!!
she has learned self-frontloading
my daughter has learned an amazing thing- and she taught it to herself. I guess you could call it a new age social story. If Belle has a new experience that she’s anxious about and she wants to learn more about before she will feel comfortable doing it herself she looks it up on utube.
this was especially helpful on our last trip to disney. she is usually afraid to go on any rides, but was curious about the hauted mansion so she looked it up on utube, rode a virtual trip through the ride (over and over), memorized what would be around every turn, and then entered it in the park with a great deal of bravery and confidence.
it was a great experience and i didn’t have to do a thing except pay the admission fee!
reading emotions and reactions
belle- everyone was cranky today
me- everyone?
belle- yes, they say they’re happy, but they look like that want to call me a bad name- they are cranky.
me-hmmm
belle- when they are like that i want to walk out, i want to leave
me- well, everyone has moods. have you ever found anything you can do to turn it around? make things better?
belle-well, I could show them something funny on the computer- then they are happy. and I could talk to them about the ducks!
me-well, is there anything you can do when they ask you to do something that would make them happy?
belle- yeah, I could do my work
me- yes, you could (my, what a novel idea)
me- how do you think your teachers feel when you say no and refuse to do your work
belle- frustrated, furious
me-hmmmm, what does furious mean?
belle- kinda angry, frustrated, mad
me- do you think they might feel disappointed? that you didn’t try to do the work they planned for you? sometimes they really try to make it fun and easy.
belle- yes, probably they do feel disappointed
me- do you think that’s what their face might look like? disappointment?
belle- hmm, maybe
me-and is there anything you can do when you want to walk out?
belle- i could look at something funny on the computer, that would make me feel better
We’ll try to move on to ask for help, ask for choices, ask for a break, but i want her to come up with those on her own as she tries to manage these relationships and calming techniques are important in anger management too.
patience would be a virtue if she had any
Oh man, patience is hard to teach, model, reinforce and learn. Of course, as a mother of a child with Asperger’s, I have a great deal of it. Making sure that I use every possible situation as a way for Belle to learn it can be very challenging. I have set up situations, like waiting for a favorite activity, with the use of calendars and countdowns, or even choosing a longer line when we are buying something she really wants. I can force her to wait while I’m on the phone (hand signals work really well here and a big thank-you for waiting helps too) or (harder for her) while her dad and I are talking, but waiting for something that she didn’t want to do in the first place is probably the hardest thing. We’ve had a few of those situations recently and I handled some of it good and some of it not so well.
About a month ago I had an eye doctors appointment for her. the good part was that she was familiar with the office, the routine, the doctor and the waiting room, and we went after a snack at her favorite bagel place. The bad thing was we got there 10 minutes too early and the doctor was running at least an hour behind. If my daughter wasn’t with me, I wouldn’t have waited more than 30 minutes for a doctor- i just don’t do that. But….. I was very aware that if we left after walking in the door, but before seeing the doctor I would be setting a precedence for future appointments ANYWHERE she didn’t want to be. So I used distraction with the fish tank, books, electronics, and told her ” a few more minutes” several times, but it got to a point when the doctor said she had one more patient to see before us, I decided to “reschedule” and we left.
Which leads us to our haircut appointment this week. Belle didn’t want to go, but agreed to after having her favorite meal at olga’s next door. We went to the appointment right on time (i prefer 5 minutes late as a back up, but it didn’t work out that way this time) and her hairdresser was “in the bathroom”. belle started immediately- “let’s go” “she’s not here, let’s go”. I ignored her for a few minutes, read a magazine, offered her my iphone, told her i had to go to the bathroom (she came along and was suspicious when her hairdresser wasn’t there and i only went a few drops), tried to call the hairdresser on her cell, and even faked talking on the phone (remember my daughter is very patient when I’m on the phone) and finally, after the longest 15 minutes you can imagine, she arrived and Belle got one of the cutest haircuts she’s ever had.
patience is a virtue- never take it for granted.
a conversation about knowledge, acceptance, and the ability to change
Belle- you know mom, you’re right, everyone with autism is different and there are different kinds of autism.
me-yes
Belle- there is laughing autism, screaming autism, stealing food autism, mocking autism (she does have an interesting way of perceiving the world)
me- well, what kind of autism do you have?
belle-bossy autism, i like to be the leader and you can’t change my autism!! You can’t change me!
me- that’s true, nobody can change you, but you can change yourself.
belle- (rare silence)
me-I’m reading a book right now (look me in the eye by John Elder Robison) about a man who has your kind of autism and as he got older he learned ways to get along with people better and it made him happy.
belle-(still thinking and processing)
We’ve had this conversation several more times with the same message- only you can change yourself , there are people who can help you to learn and grow and get along better if you want to, other people have done this before you and are ok, and things won’t always be so hard.
moods are moods
Sometimes Belle comes home moody, but we still have things to discuss and things to do. Sometimes she’s sassy and tries to make me feel bad when I have an appointment for her that she doesn’t want to keep or if i have to give her consequences that she doesn’t like. This was our conversation yesterday:
me-hey belle, we have to take care of the bunny today her litter box is full and then you have a hair cut appointment
belle-no way, no haircut
me- we have an appointment, we agreed that you would get a trim, i have all the knots out, we are going
belle- no
me-(no longer responding to that) rolo smells bad he needs a bath so as soon as we’re done with the bunny can you bath him
belle-yahhhh!!! but we have to give the bunny a bath too!
me-no
belle- but you said that we could bathe her when it gets nice out
me-i did say that when i saw some videos of bunnies getting a bath and then i read that that is dangerous for a bunny so we are not doing that
belle- but you said
me-i’m sorry i said that, we are not doing anything unsafe
belle- can i wipe her down with a towel?
me- yes, we will take care of eva- clean her cage, wash her with a wet towel, give rolo a bath and then go to either sushi or olgas before your haircut
belle-ok (no more resistance to that now)
me- and it looks like no computer today (after looking at her zeros on her schedule)
belle- i don’t care- fine- you can take care of the bunny yourself- you can do it all (as she follows me downstairs and does everything she has agreed to do
me- (no further discussion about the computer) prompt her in the bunny care including cleaning poop off her butt, making sure she’s nice and dry and refilling her litter box.
as i type she is finishing rolo’s bath upstairs- she does that independently
she amazes me- moves on, moves forward, does what she needs to do.
Trouble with tolerating teasing
I got a chance to talk to one of the paras this morning about belles intolerance of teasing ( my words) and I suggested a few things that might help. It’s so fun to joke a laugh with Belle, but if she’s not in the mood it can really backfire and effect a relationship. I believe that she needs to be appropriate no matter what mood she’s in and that we can help her learn to do that.
- -try to find a signal between staff that might show someone coming into the situation that belle might not be able to tolerate teasing or any conversation because of frustration, fatigue or hunger. Who ever is with her that hour should be her advocate
- -if she is reacting poorly try to disengage neutrally “oh I forgot something” and walk away.
- -try asking her if she feels like talking about fun things
- -try waiting for her to initiate
- -try voicing your confusion related to her reactions and how that makes you afraid to talk about fun things.
- -try talking about fun things with eachother and see if she chooses to engage.
- -if she is polite during a fun conversation consider thanking her and possibly add some points on her chart and mention it later that she was nice (not immediate praise!)
I hope this helps. Please share it with the paras. I will continue to work with her on theory of mind related to her varied reactions to teasing.
