data

I’m only a mom, not a professional researcher or even a teacher, but I know that autism strategies often need to be sceintific, data based.  Emotions don’t mix when you are dealing with a noncompliant student. Data is your strongest asset and should be your primary tool to support the FBA, evaluate the IEP and enable the team to rise above what I call “awfulizing”- only looking at one horrendous day (sometimes a whole meeting can focus on one horrendous hour).

Let’s be professional!

the “stern” look

belle and i have been working on why she feels the staff get frustrated with her and i drew her a chart that showed

belle + “yes” +”ok”= staff 

She seemed to respond well to that, but i also explained that the staff can also get frustrated about things unrelated to her and that if they ask her to do her work they are not always frustrated. Then we reviewed the nanny 911 concepts of communication and respect.

Hard concepts…… i wrote to her teachers to explain what Belle and I had talked about so we could send similar messages.

Her teacher wrote back:   Belle talked with me this morning about “stern” looks and what that means.  We explored that sometimes people don’t look happy or sad or angry while they are giving her time (ie: to engage in tasks, check her schedule, make a choice, etc.).  She ended up calling that the “blank” face.  it was a good discussion.

If that’s not communication and respect I don’t know what is.

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%!!!

Nanny 911

My daughter always amazes me by being attracted to TV shows that fill some of the academic, behavioral or language gaps in her life. She loved poko who taught her about sharing and feelings, She loves funniest home video when she needs to bridge the gap with family members and share a laugh. She learned how to read and greatly improve her vocabulary by watching between the lions religiously. And now she is really into nanny 911. It’s interesting that a child who is very rigid, has poor frustration tolerance and trouble seeing other’s perspective would love a show that shows just that in other children. She invites me to watch along and we discuss the feelings, facial expressions and communication abilities of the family members. She’s starting to see the recipe for success -rules, respect,+reinforcement, and communication. Belle went off to school this morning a little concerned about a problem she had with a staff member yesterday and we both agreed respect and communication is all that’s needed. She came home glowing!
Thanks nanny 911!

para meeting – this is the info that i thought was important to share

Family –Mom and Dad/adoption. Relationship with brothers/girlfriends, sitters. They are for fun, not “work”- outings, movies, museums, treats, shopping etc., but none of that would happen if belle wasn’t on her best behavior.

Behavior at home- happy, cooperative, polite. Doesn’t earn something for everything she does, but every privilege she has has been earned at some point. She does whatever I want her to do (but I try to make her think it’s her idea).

Words have a different meaning to belle- to us “ok” can mean “maybe, whatever, you’re crazy, ok, we’ll see, we will discuss it again later when you’re not so upset, or even no”, to her “ok” means “OK” that’s it.

Complaints- give me clues as to what she’s thinking and feeling, it’s my job to figure out what they mean ( I don’t take them at face value). I listen, not argue.

Theory of mind- can effect belle’s ability to cooperate, comply, show her work, accept praise, sensor her words, or consider the effect her words or actions have on others. She can’t put herself in your shoes, especially when she’s upset.

Presume- her love of learning, desire to get along, desire to cooperate, that she is a fun-loving kid. She is happy when everyone’s happy!

Consistency, rules, routine = happier Maribel

 

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!

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.

home schooling

i never really wanted to home school and this break from school was only supposed to be for a few days so i didn’t really prepare for my daughter to be home for a month and now i find myself with a bored 7th grader who is craving interaction with anyone besides her mother and whose anxiety over the unknown is rising.

what can i do:

• get a schedule in place and inform her of what is going to happen when
• set up some social events- not easy when her friends are busy with school and after school activities until 5pm (grandma?)
• take her to see one of her brothers- they are always a Godsend
• teach her something new
• get her out of the house as much as possible
• get myself some time away so i have the patience for these long days and so I don’t get resentful (just one yoga class a week is all i ask for)
• ask for help
• get help
• schedule up as much as i can with tutors and lessons and therapies and doctors etc
• think positive- it will all be behind us soon
• help her with calming techniques and coping mechanisms to get her through her own anxiety and frustration about being a child without a school
• get some laughs in-funniest home videos?
• teach her some skill to increase independence in her new environment
• meditate

the sad thing is that there are so many kids with autism who don’t fit into a program or a school and who have to be home with their parents way too much. It can’t be good for the child or the family- it’s like a codependency that inhibits everyone’s growth. that’s just the way I’m feeling about it right now, in my family, with my child. We need to move on.

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!

analyzing behavior

Behavior has always been intriguing and challenging to me as a Mom. I have a nursing background so when my boys were young I often did somewhat of a nursing care plan in order to chart behaviors and strategize ways to eliminate or replace the behavior. My husband and i even took parenting classes so that we would have the same goals and parenting techniques, understood consequences and how to apply them, both natural and logical. If all else failed we would turn to a reward system and some appropriate reinforcers and whala! three happy, loving, respectful, mature young men developed.

…and then I was blessed with a little girl with autism. Consequences didn’t make sense, communication was a huge roadblock, reasons for behaviors became allusive, and reinforcers took a lot of creativity to figure out and usually needed to be changed frequently. Along with that was the curious delema of my daughter exhibiting defiant behaviors at school that she never does at home and loving, trusting, mature behaviors at home that she doesn’t exhibit at school. Mix that with middle school,depression, lack of confidence, inconsistent communication (and academic) skills and extreme passions and you have a pretty miserable child (and school personal)

For years I’ve been asking for staff familiar with behavior analysis- looking beyond the specific behavior to what the function of the behavior is (usually power, fear of failure, to make a demand, to escape or refuse, or for self- gratification) and then finding replacement behaviors that are appropriate.

From what i can tell my daughter’s having 2-3 meltdowns a day in school where she picks some arbitrary reason for not complying with their requests (you need a snake, or my friend is mad at me), then ends up in the office on the floor and gets the aide on the verge of tears.  Three staff members take turns dealing with her (she sure knows how to get attention and control) usually without success in compliance, but some deescalation of the behavior. I’m trying to guide the team to figure out the function of the behaviors and to identify, teach and reinforce replacement behaviors, but i don’t really know how to do that myself and I know they don’t, so it goes into it’s negative cycle.

my goal- find the help we need, find the environment that has what she needs and avoids what she doesn’t 9sensory overload), find experienced staff that has seen this before, learn as much as i can about behavior, it’s function and teaching replacement behaviors, and doing what i can at home to teach the skills my daughter needs to succeed in a more uncomfortable, scary environment (how to refuse, how to request, how to compromise)

action- we have a behavioral therapist coming over next week. Continue to work with the school team, request a behavior plan update at school overseen by an autism behavior expert. Get a message and then meditate.

We have to do this for our future, for her future!