belle is amazing when she is passionate about something. she got interested in ocarinas from her zelda video game and loved the sound of the instrument. she saved up her money to buy several of them, taught herself how to play them from songbooks and utube and then connected with the owner of the workshop in LA that she buys them from. she asked her dad to arrange for us to visit when we were out in LA visiting her brother and we had a wonderful visit touring the whole operation. she sure knows how to make our vacations interesting!

attention and praise…….Belle accepts attention much better when she feels safe and comfortable and trusts the people around her. It also has a lot to do with her confidence level, she has what Tony attwood calls performance anxiety. I used to call it perfectionism, not wanting to do anything or try anything until she knew she could do it perfectly. It has been a deterrent to her learning new things that require trial and error or practice. Attwood describes it as extreme anxiety that she would give an incorrect answer resulting in personal and public failure. It can affect academics- belle is considered noncompliant often because of fears of failure, sports- team sports don’t work for her because of the pressure of team members, coaches and other parents, and social situations- she voices fears about being able to get along with kids or not being able to understand their moods or tolerate their personalities.

She is usually able to overcome all of these with me and doing the things she loves (she can even make mistakes and be given constructive criticism when she’s on her horse or training her dog!).

I use the work of byron Katie frequently as I advocate for my daughter, moderate disagreements and work with the team to set up an educational plan that best suits her. It’s easy for teachers and consultants to do what I call “awfulize”-stressing what went wrong, how far behind she is, her lack of progress or her regression. If I hear-

• she can’t do this
• she’s noncompliant
• if they place demands she chooses escape
• our choices are she goes home or she escalates to a melt down
• she doesn’t want to learn/be at school/cooperate

then i go into byron katie mode-

• is it true? (is there data to support?)
• do we really know it’s true? (how are we perceiving things?)
• what kind of team would we be without that thought?
• how do these thoughts affect our decision-making process, emotions, fears, maturity, professionalism?

can we turn our statements around?-

• have we given up?
• are we being faced with something that we are not trained or experienced in?
• have we failed her and dealing with our own guilt?
• have we followed the plan? sabotaged the plan?
• have we taught the staff how to follow the plan that the team has decided on?
• have we communicated in a way that allows us to work as a team every day?
• is there data to support our theories or are we exaggerating?

along with byron Katie I add the 4 agreements and it’s a recipe for success-

don’t make assumptions-don’t take things personally-be impeccable with your word-do your best

me- belle, you need a clean shirt for school ( she sleeps in her clothes so changing her shirt is the bare minimum)

belle- no!

me- (thinking that’s unusual, took a deep breath- how to proceed?) so what are you having for breakfast? your protein shake? and please don’t say NO to me, i don’t know what it means.

belle- I’ve been sick, and scared to go to school. my stomach was gurgling all night.

me- so you’re saying you’re too sick to go to school? that’s why you don’t want to change your shirt?

belle- no, it’s too cold to change my shirt…… I don’t like it. and everyone at school disagrees with me and if i say their things suck they say my things suck. they always take the other kid’s side and disagree with me.

me- ( a little overwhelmed with input) hmmmm, what if i warm your shirt up will that help?

belle- yes (put on the warm shirt no problem)

me- and how about your stomach, do you want a tums and then your breakfast?

belle- yes (drank her protein drink)

me- now i want to show you your point sheet- you get points for getting along with the paras, letting them be human, not getting angry at school, coming home on the bus (meaning i didn’t have to run over there)

belle- but they disagree with me!

me- yes, because they are human, they make mistakes, and they are treating you like a normal 13 year old and we would like you to try to act like the other 8th graders you see at school.

belle- my peers are bossy!

me- yes, they can be

belle- and they don’t let me be boss

me- they shouldn’t always, no

the bus arrived, she warned me that i might get a call from school if she has a bad day (no kidding), and then i called the teacher to update her on Belle’s anxiety

Well, Belle is optimistic about going to school tomorrow. She did her homework, packed her bag and has been talking about her morning routine.  So why do i feel so discouraged? It’s just so hard to send my child off to school and then have her turn into someone I don’t recognize, with reactions i’ve never seen, fears I can’t imagine, and anger that shocks me. We have 2-3 good days a week, usually one really bad one when i get a call at 8am for a pick-up (she arrives there at 7:45) and then at least one day that stress keeps her sleeping for a good portion of the day.  I’ll keep trying to find the answers, help her to feel safe and communicate her needs better, get the help we need, and go to whatever meetings are held to get her on track. For now, that’s all I can do.

Here is the script of a conversation we had today:

belle- tom (a para in her school) keeps picking on me, why does he keep picking on me

me- you mean he says “come on belle…..why don’t you, or why can’t you?”

belle- yes, he always takes their side- like “be nice to minni” or “minni’s ok”

me- well, he likes when you get along with minni, sometimes you do.

belle- but she eats out of the garbage……

me- well, if you’re complaining about minni to tom you know he’s not allowed to talk about another student so that’s hard for him, but that’s not picking on you

belle- i just don’t want him to pick on me any more

me- belle, if you feel like he’s picking on you can you talk to ms. little about it? (thinking about their debriefing time in the morning and also that maybe ms. little could figure out exactly what she means)

belle- she doesn’t listen to me….

me- well maybe you’re not using the right word so maybe she doesn ‘t understand what you mean. If I said that someone was picking on me it would mean that they were calling me stupid or lazy or something like that. is that what tom is doing?

belle- no

me- well maybe the word is disagreeing. is he disagreeing with you?

belle- yes!! and i don’t like it. if i say she’s gross, he says no she’s not. he’s not listening and he’s disagreeing!! and he takes her side!

me- well belle, try to be patient with ms. little at school while she tries to figure out what you mean, try to make sure you’re saying the right word when you are describing something, and remember the rule at school is that the teachers can’t talk about another student being gross or anything about the other students

Likes adventures not surprises
Likes to be greeted with a smile and hello but not stared at
Likes to talk about her favorite movies but not drilled with questions
Likes to sleep in hotels but needs a pile of pillows around her to make a nest
Loves museums but goes quite quickly through them and then wants to shop or rest
Loves dolphins but can find their squealing painful to her ears (will wear her ear covers)
Loves to watch tv but only likes animal planet, fhv, or shows about ghosts
Loves Chicago but might not like the sears tower
Excited about medieval knights but might be disappointed if there isn’t a dragon or if it’s too loud
Loves to eat out but doesn’t like spicey food-pepper, BBQ etc
Loves the natural history museum but has not been to the science museum
Likes space and the body but not electricity (static)
Likes to be invited not bossed
Likes to be communicated with not scolded
Likes to be with others but not if they take too long (at restaurants and museums)
Loves to swim but not if she’s cold or tired
Likes to walk but gets tired fast and easy (and needs to see the destination)
Likes to keep busy but wants choices and to know what’s coming next
Likes a schedule but likes it flexible
Wants to get along but if she’s upset she might say something mean
Wants to tell you what she’s thinking and feeling but can’t always find the words
Wants to be the leader but doesn’t usually get the chance
Wants to talk about sea monsters but wants you to believe they’re true

Loves physical humor (funniest home videos) but doesn’t like to be laughed at if she falls

Likes to shop but likes to have the most money – so if nobody has money she’s fine

Likes lots of attention but only when she’s looking for it

Likes to tease but not be teased

Likes choices but not when she doesn’t like the choices (is disappointed or frustrated)

Wants to have fun, get along, cooperate, but sometimes it doesn’t work out that way
Wants to do everything but might need some down time (rest, tv, gameboy, shopping)

this is how last night went-

4pm- woke from a nap -happy

ate dinner-didn’t even like 10 % of what i made:)

4:30 -at the barn, rode bareback-happy. got to watch some jumpers, very relaxed for an hour and then complained that another horse stole some food from hers and that someone at the barn was a little crabby -”they were kinda stern, what’s wrong with them?” ( they were negotiating the sale of a horse that wasn’t going well, but she thinks everything’s about her)

6pm -long drive to a dog obedience class, happy in car watching utube on my iphone

7pm-loved the dog class. her dog was the most well behaved, she learned the commands right away, lots of great breeds there (husky, german shepherd, jack Russel), lots of great doggy tips

8pm -leaving, a man in a wheel chair needed to get past her and said excuse me, but had difficulty saying it nicely -”he was rude, why does he have to talk like that, i don’t want to go to that class anymore, he shouldn’t talk like that” (he seemed to have severe CP and unable to move his face muscles, but she holds him to the same standards as everyone else)

8:30-”it was awful, i’m never going to that class again, why was it like that…………

all I can do is to continue to remember the positive, let her vent,remind her to use her calming techniques (hug her dog), make sure she has her meds, meals and a good nights sleep, help increase her perspective taking and ToM skills, give her points for letting people “be human” and noticing when someone was nice or something went well. ignore the negative talk as much as possible and make sure that i’m not dwelling too much on the negative also.

Well, there was a time when my daughter didn’t care what others thought, so now that she’s self-conscious to the extent that it could even bring her to a melt down if someone sees her make a mistake or get hurt, it adds a new challenge to our life-the need to comfort while reigning in the anger and containing the “crash”.  It is quite ironic that embarrassment ends up drawing more attention to her because of her behavior. Maybe someday this will motivate her to hold in her anger and frustration, cooperate, use calming techniques, maybe even laugh it off- be thick skinned, be human!  Could this low level “peer pressure” grow into motivating her to try harder, learn more, be more mature, be more positive? We can only hope

this is what happened-

after 6 years of horse back riding, 2 years of cantering, 6 months of jumping the inevitable happened- her horse refused the jump. she’s seen it happen to many girls and many horses, it’s pretty typical any time the horse is tired, the rider hasn’t given the right cues, the horse hasn’t picked up enough speed for the jump, or there are too many distractions in the arena. It can mean that the horse is being stubborn or, as in this case, is protecting his rider in an unsafe situation.  The horse is communicating that something is wrong and stops short. It can be dangerous, we’ve seen riders be thrown off, although this is rare. Usually, and this time, the rider (maribel) was just startled….. and scared, then embarrassed, and then mad!!! at the horse, at me (?), at the trainer, at the other girls looking at her, and at herself. We’ve seen other riders work through this scenerio- you scold the horse, turn him around and do the jump over to teach him that you are the boss and he can’t just decide which jumps he will and will not jump, then praise the horse when he does the jump successfully, then you move on- it should be a nonevent. she knows this, but couldn’t pull herself together enough to do it.

she was tired and hungry so for this to happen at the end of her lesson only added to her being physically exhausted.

this is what i did-

gave her privacy for her tears (asked other riders to give us one side of the arena)

gave her a surgery drink (her blood sugar gets low when she’s upset and i keep something on hand)

listened without criticism

set limits if she started to swear or be rude, or if she was scolding or hitting the horse  “not allowed!!”

gave choices (ride appropriately or get off)

had her move forward- having the horse walk slowly seemed to comfort them both

calmly and privately left the arena, untacked the horse and left (she went to the car on her own to rest)

spent lots of time assuring her that her horse was protecting her from jumping when he wasn’t ready

Now we have to work on rebuilding trust, it will be a slow road and she might stop jumping for a while (she loves it, but now she’s scared). We will also write out a strategy for how she can handle it better next time.

and then we can talk about how it felt to be embarrassed and how to handle that uncomfortable feeling! growing pains seem to be so much worse when you have autism, but i believe the horse helps build confidence and will eventually motivate my daughter to handle these new emotions and her reaction to them.

like my husband said- “at least she cares what others think!”

Every person that comes into my daughter’s life needs to be educated about HFA/Asperger’s and her. It’s exhausting, but can’t be avoided. she does some advocating for herself, but unless we get involved the process of mutual respect goes very slow and relationships can deteriorate quickly.

I started some autism training with the dog trainer…..this is what i wrote:

As we go through this adventure with you I know it won’t be without great challenges. If maribel didn’t have severe anxiety and communication and social deficits we wouldn’t be looking into a service dog for her. After you left on Wednesday Belle seemed happy for about an hour and then complained that you were “mean” to her during the walk. Please don’t get defensive about that word, she uses it if someone has a flat affect, has a different facial expression than she expects, says something that makes her feel that they are teasing or making fun of her, or if they’ve denied her something she feels she has the right to have (among many other things). I plan to stay close from now on so that i can monitor, translate and clarify misunderstandings. Dave and I also plan to spend as much time as possible informing you of what we understand about Maribel to help this process run smooth and help us work as a team. I think maribel was reacting to you not telling her which dog will be hers and what that dog’s name will be. It’s a very long time for her to wait for something that she can’t see the logic in (you have all these dogs!)

On your way out the door you also said something to both of us that made me realize that you don’t understand Belle’s communication difficulties- “you got your dog fix”- she had absolutely no idea what you were talking about. She wanted it to mean “you got your dog”, but could tell that you were not ready to say that so she was confused and bewildered. I translated as well i could, although it’s basically a drug related term so it was hard for me to put it in words she would understand (a little like an addiction?). She doesn’t understand most things that someone just learning english wouldn’t understand- slang, idioms, sarcasm etc.

do you think in 5 months I can be a dog trainer and she can be an autism advocate? that’s what I’m planning.