looking at people differently

My daughter has had a hard time with paras (paraeducators)- too many of them have been negative with her-scolding, threatening, redirecting, even restraining. It’s hard to trust someone who doesn’t connect with you, respect you, understand you.

things are changing….. through education, support, a new PBS and ABA program, an adjustment period, and some huge successes on all sides the para student/relationship has blossomed into something  therapeutic, productive and even fun!

In the midst of this progress one of my daughter’s classmates died of a seizure and she had the opportunity to see the paras in a different light- as humans with feelings and love.
After the funeral she held my hand and said, “mom, the paras were so sad, they really cared, they’re really gonna miss him….. I guess they’re not just in it for the money!”

lessons learned

my daughter and I went to a funeral yesterday for a boy a few years older than her who died from a siezure. she didn’t know him very well, but had seen him over the last year at the bus and in the “sensory room”. From what my daughter could explain to me the boy was much less verbal than her. Being new to the school and the autism program she’s just starting to understand how to communicate with and respect the strengths and individual qualities of the kids who don’t communicate as well as she does (we don’t use the term “low functioning”) so she hadn’t interacted with him much. she was quite shocked and upset about someone her age dying. In her own spiritual way she talked a lot about reincarnation and what animal he might be now.

then she said something to me, and eventually to everyone she encountered- “you know he taught me a good lesson…..i should be nice to everyone in my life because you never know when someone will die, you never know if it’s the last time you’ll see them”.

reflective listening/theory of mind

belle struggles with people disagreeing with her when she complains about other students.

Her and I talk frequently about other people’s opinion, some theory of mind stuff about how others can feel differently than she does, how it feels for her when she thinks someone isn’t listening to her and how she can express that she’s not feeling listened to if someone gives their opinion instead of really listening to hers. she’s been watching nanny 911 and sees the nanny mediate between kids and their parents to help the kids express those types of feelings instead of acting out and then we have been practicing together.

It’s best to reflect what belle is saying  and try to avoid:

• agreeing that the other student is grouchy or a problem (or “hates the world”?)
• disagreeing that the other student is a problem and saying that “we love him, he’s so sweet”
• ignoring belle (unless reflecting doesn’t help)
• saying that she’s wrong or interpreting it wrong

Saying “it sounds like you feel____” or ” belle do you feel___?” or “sometimes it can seem like_____” or “is he always_____?”

and even asking belle if she’s feeling listened to and prompting her to ask to be listened to if not really helps!

***nanny 911 is also great for talking about how people with different facial expressions and in different situations might be feeling! she’s putting herself in other people’s shoes!

We even had a chance to talk about why she doesn’t like praise and how important it is to hear more good than bad from her teachers and that’s why they praise her so she should think about that when she hears it. We’ll keep working on that one!

who doesn’t avoid work

it’s very interesting to me that one of belle’s greatest struggles is work avoidance and if the teachers of her past hadn’t avoided the work that was necessary to support her correctly we wouldn’t be in this boat.

we all avoid work- what are the ways adults to avoid work? well, they say they are going to do something and just not do it, say that it doesn’t need to be done, say “it’s not my job”, say that it won’t help anyways- or even sabotage the plan or retaliate against the person making the request. Maribel is smart, and she is normal in that she wants to avoid what is too hard, uninteresting, doesn’t seem to make sense, doesn’t have a purpose or that she might fail at. We just need to teach her acceptable and appropriate ways to communicate it.

Give her an out, or give her the tools to succeed, that’s all she’s asking for.

She wants to succeed, she wants to please you and she wants to learn!

what does anxious mean?

We had a great conversation today…..

We were watching a dog trainer on tv and she commented that the dog she was training was very anxious which was contributing to his aggressive behavior

belle- what is anxious?

me-it’s another way of saying that he has anxiety about what’s going on around him- kinda a combo. of excitement and fear

belle-oh, so then he misbehaves?

me-yes, because he doesn’t know why people are teasing him, who is going to take care of him, and what the rules are. Do you ever feel like that?

belle-yeah

me- like at school? especially going to a new school- that can make you feel anxious right?

belle- yeah

me- so the new teachers will have lots of lists and rules so you know what will happen when and what to expect so that you won’t be so anxious.

belle-oh

translations-when she says ____, she means _____.

My daughter’s expressive language is quite delayed although, with her extensive vocabulary around her special interests (parasites, black holes, mononoke, and shiba inus), most people assume that what she needs to communicate will come out clearly. the tricky word here is assume. Not a good practice when it comes to dealing with a person with AS.

example -

when she says i’m tired, she could mean…..

• this language is too confusing for me to process
• this is very scary for me
• there are too many new things going on here
• this person i’m dealing with is too nervous and reactive
• i woke up very early
• i didn’t sleep well
• i’m hungry
• my adreneline shot up and has now plummeted
• my blood sugar is low
• i’m feeling excluded and inadequate
• the sensory input is too loud, too bright, too cold, too much of everything
• this is too hard for me, why don’t they understand me, why don’t they listen to me
• i miss my home, my dog, animals
• i’m bored (which has a whole other set of meanings behind it)

that’s a lot considering all she said was, “i’m tired”.  Poor expressive language skills can make a child feel like they’re in prison and make the person working with that child very confused and frustrated.

what a great day!

I can’t deny that this was an amazing day and since i’m in the process of setting up a new behavior plan it will be a great day to start so I can give lots of points right off the bat. what went well?

• get up and get dressed-ok
• dirty clothes in the basket-ok
• play with the bunny (a daily responsibility)-ok
• turn off wii to do some work with mom-ok
• let’s discuss appropriate subjects to talk about with people we don’t know-ok
  
• let’s start a money chart-ok
• let’s discuss florida some more since you say you don’t want to go-ok
• cooperated for the tutor- read and dictated, was happy and friendly
• transitioned right back to me when i got home
• went to art
• went to music- participated perfectly in both
• went to the barn and gave her horse a work out with perfect social behavior. sharing her tools and saying hi first and responding when others did first
• talked about why kids don’t like horror films and then let it go (whew)
• got herself a nutritious choice for dinner
• agreed on how to use her last hours before bed

I couldn’t ask for a better way to start a behavior plan!

I have a case of the if only’s

I don’t get these very often considering how difficult it is to make decisions regarding what’s best for my daughter or even to know how to plan out a day, but right now i have some regrets about things and it’s weighing on me. She loves Halloween, dressing up and dressing her dog (and horse) up, but she does very poorly with contests. At 12 she has had many experiences with contests and knows that you can’t always win, but has won enough times to think that the odds are in her favor and the judges will think the same way she does (that she’s the best). there have probably been times (in school) that have worked to our disadvantage because people have fixed the results of a contest because they know she likes to win and love to see her happy (and hate to see her angry!)  So, to make a long story short, we went to a doggy costume contest and she didn’t win. to her credit, she didn’t make a scene, or get violent- she even waited until we got to the car to express her disappoointment, but the sadness she expressed made me realize that she has a long way to go to understand contests, judges, winning, losing, subjective opinions and the joy of just participating.

on top of that-she chose to be a anime character for halloween and then she was upset that nobody knew who she was. It’s her favorite holiday and it’s riddled with disappointment and frustration- i guess that’s life, but it’s tough when you have no social life and no friends and look forward to a few events that don’t work out as your expect them to.

so what are my “if only’s”?

• if only i had refused to go to the pet costume contest
• if only i had desensitized her to losing a long time ago
• if only i hadn’t let her be a mysterious character for halloween
• if only she didn’t have asperger’s syndrome (ok i said it, but i only feel like that on my “if only” days)

the curious incident of the snake in the school

Well, the snake is missing!!! the teacher arrived in the school today to find the cage empty!

Belle is not in school right now because we’re transitioning her to an autism program so when the teacher emailed me this morning and let me know that the snake disappeared I told her in hopes that she would stop asking if she could take it to the new school and we could move on. Instead, she got quite agitated worrying about “kenny’s” welfare. She insisted that she go to the school and help look for him. I told her we would have to wait until after school, but 30 minutes later when i left her with my sister while i went to the dentist she walked up to the school (with my sister keeping pace with her and trying to talk her out of it) and went to the office insisting that she had to help find “Kenny”. I actually thought that the teeth scraping i had just gotten through would have been the low point of my day, but when i got back in my car to see 3 texts and 4 missed calls i realized i was wrong. I consoled my sister and told her i would be right there. fortunately my sister started laughing so hard from the crazy situation she found herself in that she started to cry and Belle got concerned about her aunt and agreed to come home. So when i arrived at the school i was greeted by a very cooperative, calm child who agreed that Kenny was probably out hunting mice and having a good old time. She slipped back a few times today into worry for the snake (very much like the boy in the “incident of the dog” book) thinking that he must have been stolen and that she was responsible for solving the crime, but then we moved on to the new concerns.

She actually thought that she would have to put on her detective’s hat and solve this “crime”

rounding up!

We’re celebrating Belle learning a new concept- rounding up. $6.99=$7, .99=$1. etc.  Having struggled with math, she didn’t understand the way the store labels things is deceiving and that if your really want to budget your money and compare prices you usually need to add a penny. I’ve been trying to explain it for several months and yesterday she said to me, “so this one says 3.99 and that means $4, right?”

I was so happy that she got that abstract concept.Then i went on to introduce the subject of taxes and the government- we have a long way to go there, but it’s amazing how trading card shopping can motivate someone to learn very diffficult concepts! Go webkinz!