START-Statewide autism resources and training
If you live in Michigan START is going to be your best resource, as a parent, to get the services you need for your child. Going to the workshops enabled me to gain the knowledge I needed to advocate for my child, work as a team with the school staff, provide the best placement possible for my daughter, understand what strategies work for kids with autism and why, and to stay hopeful that my daughter will live a full productive life.
go to their conference next week in Lansing!!
http://www.gvsu.edu/autismcenter/index.cfm?id=D0CEDF6A-ECB0-AB25-74D203B376AB0A22
START supports parents 100%!!!
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 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!
pulling rank and testing behaviors at school
My daughter’s aide asked me today if she should try to get belle to do things for herself and gave the example of throwing away her garbage.
this is what i wrote to them:
I’ll use the garbage example to explain the strategies that i would use to increase compliance and why. I’m really glad she asked my advice before deciding how to handle the situation, her patience and maturity is greatly appreciated.
my recommendations-
- continue to build trust and respect- the more maribel feels safe around you the more she will want to do things for you when asked or even independently.
- make requests in a positive proactive way- “Belle, how about if we move the garbage can right next to your desk for a while then when you need to throw away your garbage it will be right there.” In that way your are making the assumption that eventually she will be independent in throwing things away and assuming also that it was only a logistics problem as apposed to her being defiant.
- make things rule based- ” the janitors have a rule that we throw away all of our garbage or we can’t eat or play here anymore – and we don’t want to get ants.”
- break it down into small steps or make it a team effort- “belle, i’m gonna get your milk carton, can you grab the plate and throw it away?”
- ask for help instead of giving orders- “I’m so busy right now- can you help me clean up here so we can move on to —-?”
- reinforce- “thanks for helping, cleaning, following the rules!” “you earned a __”
- appreciate small steps toward compliance, respect and cooperation throughout the day.
- model what you would like to see and hear-
- make it fun? that could be tricky, but we have lots of fun at home doing boring things
basically i think: familiarize, desensitize, reinforce.
I often think of that movie “My Big fat Greek wedding” when she says that her trick to get her husband to do anything she wants him to is to make him think it was his idea. It works with men and Belle!
of course, you don’t have to do all the things above with every issue, but one or two should help move things in the right direction.
Also, it helps that I’m aware of the problem because i can really emphasize at home that she needs to be responsible for herself and not to expect others to do things for her- even me!
cream in the oreo cookie
As a mom of a child with autism and her main advocate I often find myself calming her, explaining her thought process, reactions and feelings, and tempering other’s reaction to her. I have found that it’s best not to let things pass, but to intervene asap to help everyone learn from the situation and to help prevent the relationship from becoming irrepairable. I try not to make any assumptions about how she’s being treated or even that she’s ever reacting. My goal is increased communication, social connection and emotional stability for belle, and increased knowledge and compassion by others.
example:
-I’ll help Belle to relax at the checkout AND i’ll hint to the clerk not to get too personal with her comments about our merchandise.
-I’ll explain to Belle that people don’t always understand how she feels AND I’ll ask peers to be a little more patient.
-I’ll explain to Belle that Daddy is in a hurry AND I remind Dad that we promised a short shopping trip.
-I’ll tell belle that she has to be more flexible AND I’ll tell her teachers that she needs frontloading
-I’ll tell Bellle that she needs to give things a try even if they look too hard AND i’ll insist that her work be modified.
-I’ll explain copyright laws to Belle related to the website that her brother is helping her with AND I’ll tell her brother to be a little more patient and take time to explain.
-I’ll tell Belle that emotions are confusing and people don’t always look happy when they say they are AND I’ll suggest that poeple interact with her with a little more consistancy between their words and expressions.
-I’ll tell Belle that everyone has different opinions and she needs to respect that AND i’ll explain to others that she takes differences in opinion personally – that’s how her mind works.
-I’ll tell belle that people laugh at eachother and some people laugh more that others AND I’ll explain to people that she doesn’t like to be laughed at.
basicallly- she has to live in society and society will have to have some respect for her autism.
i learned something new!
It amazes me how interesting and puzzling autism is and that i can continually learn more about what it is, how it effects my daughter and our family and new strategies to try.
what did i learn last week?
- shaping techniques that can be used to modify behavior (I still feel like you have to be an expert to do this, but we’ll see)
- how to put a less desirable behavior on cue and then work to extinguish it (can we put refusals and complaints on a schedule?)
- how people with autism can have trouble with revisualization which effects their understanding of what the final results of something might look like preventing it from being attainable.
- it’s necessary to set limits with verbal fascinations (well, for my own sanity i’ve already done that)
- that autism impacts abstract reasoning and visual perceptual skills along with what we already knew (social, communication, auditory processing, behavior, and sensory processing)
What will i discover tomorrow that will help me get through another day?
learning lab
Maribel allows me to get a pretty good picture of how her mind works through her words and emotions. It’s not too different from how we all think and feel at times just at a more concentrated level. Working and learning form her reminds me of the man who had a hole in his stomach and it allowed dr. Beaumont (was that him?) to study the digestive tract. Maribel’s impulsiveness and candor gives us a view into the nervous system and brain. So, by observing maribel we can all face our own challenges with jealousy, feeling inadaquate, social ackwardness, perfectionism, physical, emotional or cognitive differences, sensory issues, communication breakdowns and frustration or anger.
her reactions and her words give you a window into how the brain works and interprets events. she has no filter so it all comes out. she says the things that we censor or hold back.
- this sucks
- this isn’t fair
- i can’t stand the way this person looks or talks
- don’t criticize me
- don’t judge me
- don’t disagree with me
- i do not like being scolded or threatened
- i can’t stand that noise, these lights, that voice
- i’m afraid
we all have those same feelings, but they usually get repressed and we end up with aches and pains, headaches or heart attacks. Let’s use maribel to face our own challenges and advocate for her, ourselves, others for the good of everyone.
defensive
it’s going to happen to you one day- Belle is going to accuse you (or if you’re a teacher it might be one of your favorite students) of being “mean” or “cranky” and you are going to take it personally and get on the defensive.
Remember-it’s not about you, it’s about her and how her mind works, how she is percieving and processing information, and interpretting what happened. And… sometimes people are inadvertantly mean, she is treated unfairly, and she exaggerates her feelings.
what can you do? reflect her feelings, be understanding and respectful and see how everyone can learn from the situation.
If she interprets not being asked to partner with someone as “being mean” then listen, problem solve, interpret her feelings in a positive way and check back to see how the solution options worked.
Adult vs. Peer relationships
what can i say, belle would often prefer to be with adults than peers.
adults answer her questions, tolerate her obsessions, listen to her talk about movies and dragons, and are much more careful and clear with their emotions and facial expressions. I don’t blame belle at all, i’m just wondering if things will be better when her peers are adults?
levels of compliance
there are several levels of compliance that we see with belle.
1) passive compliance- I make a request and she says “ok” with a smile even:) what i’m thinking: thank God. what i say -”thanks for cooperating” “now we can do such and such”
2) compliance with baggage- I make a request and she moves in the right direction , but i have to hear complaints “it’s not fair” “you’re the worst parents ever” “I hate this.” what i’m thinking: thank God we have forward movement. what i say- “ok, thanks for cooperating” and try to ignore or set limits with her remarks.
3)unacceptable compliance- I make a request and she says “no” or “make Me”. what i’m thinking-Oh man, i have to tread lightly here and strategize well or this will backfire. What i say- maybe nothing at first since she is getting agitated and we have to calm things down. it’s not time for a lesson or a power struggle. If i do talk i might just set limits “I’m sorry, that talk is not allowed” “we need to move forward”
luckily, most of my requests are met with passive compliance, but i know the others well and we discuss them with her when we’re both calm and in very, very good moods.
