empathy starts with education

belle and i had some good talks this afternoon- she’s was very positive today.

* She really wants to use the word “normal” in regards to her gen ed peers, but i told her that we are going to refer to the kids without autism as “peers”.
* i told her that saying mean things to or about the AI kids in their presence is “bullying” and not allowed.
* we were looking at webkinz animals and i explained that one boy is like the parrot- repeats what you say and might even squawk. People may get annoyed by, but can’t be mean to parrots (or kids like them). We also talked about how the other kids are more like puppies- they understand what you are saying like a dog understands if you’re being friendly or mean, but they can’t talk (like puppies can’t talk). I explained that the talking part of their brain doesn’t work, but that the understanding part does and also that even if puppies (or other students) are annoying she can’t bully them. She was very receptive and liked talking about all this in the midst of her favorite things- a huge display of webkinz! She also went on to tell me that the kids who don’t talk do “everything” and “all their work” (which is much more than she’s doing) and “are really smart.” Maybe people will say all those things about her someday?

Belle will need added points on her chart for behavior in home room that includes respect for the AI kids, manners even when annoyed, and asking for a break if annoyed (we’ll progress to signs of compassion and empathy).

daily progress- high expectations

social conversations

belle- mom, the girls don’t like me. they whisper around me so i can’t hear and they don’t talk to me.

me- well, girls whisper a lot and that’s how they talk to eachother. it’s not always about you or to keep you out

belle- well, they aren’t including me

me-well, you don’t say hi, or join them or talk to them so they might think you don’t like them. How about try to say hi first or maybe ask them a question?

sometime i model that by initiating a conversation with girls her age and then she’ll join in or totally ignore them, but this time another girl joined us right after that conversation and instead of belle waiting for her to talk first Belle said Hi! and asked a question. the girl was cheery and friendly and perfectly reinforced belle’s attempt at appropriate social behavior.

yeah!!!

frontloading that backfired

Occasionally i know just how to prepare and support my daughter through a new situation, but as she gets older and the situations get more foreign to me and more complicated the whole process gets harder. Belle was in a horse show today. It was her second one so she was somewhat familiar with the process, the waiting, the performance, the judge and the ribbon presentation, but this time there were 4 girls in her category instead of two so the likelihood of her getting 1st or 2nd place was less. Soooo, i decided to start preparing her for 3rd or 4th by showing her the colors of those ribbons and showing her all the other horses in the barn that got them. While she was practicing for the show she said she wanted all the colors of ribbons, but i didn’t think that that meant she didn’t want 1st or 2nd again if they gave it to her. she’s usually a perfectionist and a poor loser so I thought she would still prefer 1st place.

she was in two events with 3 other girls and ended up with a 2nd and 3rd place ribbons! Instead of being happy and proud like i was she was mad about not getting the white (4th place) ribbon and left in tears. she was basically venting all the pent up anxiety that she had during a long day of anticipation and i don’t know if i could have really prepared her for every scenario, but this really surprised me. Girls!

if only it could be morning all day

Mornings are pure bliss with my daughter. I’m thankful for that every day. things are even better when she’s in school than on the weekend. she gets herself up, watches her favorite show, does a little computer- all before i even get up- then gets dressed, eats and is off to school with a skip in her step. All smiles, all optimism, all forgiving. The glow gets chipped away throughout the day, but I’m hoping as she gets more and more comfortable in her new school that the happiness will settle in for longer periods and that other poeple in the world can start to experience this happy child. She could conquer the world with this attitude!

the grouchy kind of autism

I’m getting used to my daughter complaining about school and everyone who annoys her or is “mean” to her, but today she was extremely negative and it hit me off guard. I always envision picking her up and hearing about all the great people she met and the great things she did (hasn’t happened this year yet).

So, when Belle came out of school today saying that she would never go to school again, hates “those” kids and hates everyone at the school i clammed up so i didn’t say the wrong thing.

belle- WHY AREN’T YOU TALKING

me- well, i just don’t know what to say right now (i wanted to ask her what she did like or ask her if she did anything interesting, but that can backfire so i stayed quiet.

belle-YOU WERE WRONG, THIS ISN’T A GOOD SCHOOL FOR ME. THOSE KIDS HAVE A DIFFERENT KIND OF AUTISM THEN I HAVE, THEY ARE ANNOYING, THEY MOCK ME AND WON’T STOP TALKING!

me-well…… that is true, they don’t have the same kind of autism as you have because you have the grouchy kind of autism!  (i don’t know where i got that from, but it was heartfelt and it made her pause a minute)

belle was somewhat speechless and then get a little defensive saying i’m a bossy mom or something. I stopped to get myself a high salt, high fat snack (mostly to step out of the car for a minute, but it had other benefits too). As we drove and stopped and talked, belle started to relax and is now taking a nap. I had a chance to go through her backpack and discovered that she actually had a great day until the last 20 minutes (which must have seemed like a month to all involved) and when she wakes up we’ll problem solve about her classmates and lunch ….and maybe even her grouchy form of autism.

diversity training

I’ve spent a lot of time educating people about autism and expected (and got) understanding and compassion, now i have to do the same with my daughter. We moved her to a center program for kids with autism so she would get the best services, staff, programming and now she not only has to try to fit in with her general ed. peers, she has to fit in with kids that she describes as gross and in need of nanny 911. I know that her tolerance is very low for many people and situations and that our society is very intolerant of differences in behavior, but it’s sad for me to hear my daughter speak like that about other kids on the spectrum. she’s what some call “high functioning” and thinks of herself as omnipotent so to tell her that she has the same neurological disorder as nonverbal or less social kids is confusing to her, and of course, theory of mind issues make it very difficult for her to put herself in other people’s shoes.

We got some books about the “spectrum” and autism characteristics, especially written for the school age child so she can learn the material just as any child would. I hope she can learn patience and compassion towards her AI peers and maybe even be able to model speech and social skills as time goes on, but we have to take it slow, be realistic, set small goals, model and reward progress towards acceptance and keep teaching facts.

Knowledge decreases fear which decreases insensitivies.

What we want from society we start right at home.

expand every word times ten and you have the meaning

You know how every picture tells a story? Well, with my child (who has a pretty severe speech delay) every word tells a story- she just doesn’t realize that others don’t know her story. It’s that theory of mind dilemma, she knows what she knows, not what others know.

Example-a while back my daughter heard that there was going to be a play of alice in wonderland in her school and she was very excited about wanting to be in it. She ended up opting out, but the school staff was very confused about why it didn’t work out. I had to basically translate what she said to me (and them) so they would understand all the background and reasoning of everything that transpired.

what she said-I want to be in the alice and wonderland play

what she didn’t say, but thought and felt- I was in a play last year with 6 kids from special ed and i got to be who i wanted and say what i wanted and it was great! I was in the play with kids that i knew and felt comfortable with. I like the alice and wonderland movie, i want to be the cheshire cat (exactly how i remember him- with full speaking parts)

well, the 6th graders weren’t given speaking parts in the play, they were basically all flowers!

what she said-I don’t want to be a flower in the play

what she didn’t say (and came out at home or with negative behavior at school)- this sucks, i hate the people who are doing this play, i hate the cheshire cat, i’m disappointed, i’m embarrassed, i hate this school, i miss my old school, i miss being the boss, i want choices, i want the play to be how i imagined it would be.

when we took the time to listen, comfort, and problem solve with her she didn’t participate in the play, but the misbehavior stopped and hopefully she learned something about social skills, managing disappointment, problem solving, flexibility, trust, self confidence and self control.

sometimes siblings are the only ones who understand

From Belle’s brother David 11-08

What I see as her strengths:

• Her desire to complete something. With her video making, every time we talk it’s about her movie that she is working on. Even if we don’t talk for weeks, when we do talk again it’s like we just stopped talking about it 2 seconds ago. If she has a project in mind, it’s always on her mind and she wants to finish it.
• She’s a perfectionist. This one will be hard because it can impede her ability to complete a project, but it will make the project better in the end.
• Her knowledge of animals.

What I like about her

• She is very loving, funny, and can easily make people laugh.
• I like that she loves movies.
• Her love of animals.
• That she likes Disney for the atmosphere and not the rides.
• How much she likes and is nice to my girlfriend.

What I like doing with her:

• I like taking her to the movie. She is one of the few people that will see a movie multiple times in the theater and enjoy it like it’s her first time seeing it.
• I like watching the special features on movies with her and all the questions she asks about them. It keeps me thinking about movies.
• I like making movies with her.
• I like playing with Rolo with her.
• I like bugging her and asking her questions.

What I see for her in her future.

• Anything in a creative field where she can do what she wants, which could include movie making or website design.
• Anything dealing with animals.

From Belle’s brother Nick

I like that Belle is curious about the world. She is very passionate and focused on what grabs her interests. When she gets a project in mind, she is determined to finish it. I think it’s awesome that she’s interested in film and special effects.

I enjoy spending time outdoors with Belle and going to see movies. It amazes me how much she remembers about movies and stories. Her ability to recall information seems very tied in with how valuable the material is to her.

I also relate to her isolation. I don’t have many friends and I have little in common with most people I meet. I often feel misunderstood. I think Belle feels that way too.

From Belle’s brother Jeff

I enjoy playing video games w/ Belle. We mostly just play the Zelda games together which are filled w/ complex puzzles. When we play together she always wants me to play after she’s completed a huge portion of the game herself so she can see the ending quicker. Sometimes she’ll even point out things that I would never think of. More recently, when she really gets stuck, she’ll get on a computer and search the internet for a walk-through of the game. Then she’ll carefully follow the instructions and use the help she receives to complete her goal. In the end it comes down to: when she’s in a positive thinking environment, while playing these games she loves, her problem solving skills really show up clear along w/ her ability to obtain, accept, and use help if needed.

how did you ever get her to do that?

No matter if you’re referring to air travel, riding a bike, participating in science class or going in her first horse show, the answer is usually the same. the timing of each step might vary, but the recipe is tried and true:

frontload, desensitize, teach necessary skills, reward successes- and of course, make it fun.

frontload, desensitize, teach necessary skills, reward successes- and of course, make it fun.

frontload, desensitize, teach necessary skills, reward successes- and of course, make it fun.

frontload, desensitize, teach necessary skills, reward successes- and of course, make it fun.

frontload, desensitize, teach necessary skills, reward successes- and of course, make it fun.

frontload, desensitize, teach necessary skills, reward successes- and of course, make it fun.

manipulation vs. communication of needs

You are heading down a slippery slope if you interpret my daughter’s behavior as manipulative- meaning that you see it as something she does to change your thoughts and feelings or to effect you in some way. According to most resources on Asperger’s syndrome, the students get their needs met by any means they know how without consideration of other’s feelings (even though there is some regret later) or understanding of the effect they have had on other’s feelings and need to be taught how to get those same needs met in appropriate ways.It’s a multidisciplinary challenge, meaning that speech,OT and SW all need to work together with the teaching staff to keep the child engaged, cooperating and working in the right direction. Oh, there’s that word “work” again. Let’s not model avoidance!