The Status Woe

Rising above mediocrity one mishap at a time

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Retrain The Mom Brain

OutofOrder

Photo credit here 

Parent training II

You may remember this post about my first time working with Issy here.  Or you can just check out this video.

Well, you will be glad to know that it got better!

She tends to get angsty to me.  Always has.  I think that is pretty typical for most kids (even “normal” ones).  They always seem to have a short fuse when it comes to their parents.

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Our behavior plan is AMAZING!

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Right from the start Issy’s aggression has gone down.  And by down, I mean nearly disappeared!

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Well, we saw a spike in behavior when I started working with her.  14 years of her having a short fuse with me is bound to affect her.  However, our behavior plan is so kick-ass that even with me implementing it, her aggressions have gone down!

We’re on the right track!

When our insurance company saw the data, and the behavior spike, they determined that the behavior treatment wasn’t working anymore and that they were pulling funding.

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Of course, it was explained to them.  They didn’t care, they were done.

No problem!  We’re ready for her to come home.  And most importantly, SO IS SHE!

So I explained the behavior plan in this post here.

It’s intensive, meaning that when you’re on duty, you’re busy!  But her behavior plan isn’t rocket science.

To put it simply, she gets tokens.  She turns in her tokens to get things she wants.

Sort of reminds me of something…

Oh yea, life.

Well, she earns token much faster than most of us earn money.  And we give her tokens constantly for doing the right things.

When I am working with her I have to carry a boatload of things:

Tokens

Token board (with Velcro so it all attaches)

Two timers

Counter

Ponytail holder

Baseball cap

Obviously, I need to carry tokens.  The token board has to be close for Issy to actually put the tokens she earns on it.  We time many activities so it really helps to have TWO timers.  The counter is when I need to count something.  For example: if she starts to get aggressive, I need to count how many times she hits me, herself, or property.  The counter is the easiest way to do this.

And if she does get angsty, it’s best if I get this mop of hair into a ponytail and put a hat on.

I found this belt on Amazon.  I took off the chains but I love all the loops for hooking things onto it.

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Matt calls it my batman belt.

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I love that man!

Here is a video of Issy trading in tokens for ipad time!

Nightly prayers.

Some personal thoughts on my training:

What my instincts are, as a mother, to do with Issy are almost always wrong.

Here are some examples:

If she is sad about something I should NOT go and try to comfort her.  She gets no comfort from it and I’ll likely get hit.

If she wants something I should not give it to her.   She has to earn everything.

If she is sitting quietly for long periods of time I should not try to talk to her.  She’ll get mad and hit me.  I remember feeling that way about my mom and I’m NOT a child with autism!  Hahaha!  Soooooo totally normal?

If I have to tell her “no” and I feel badly about it.  It does no good to explain.  Once we wanted to go to the fair.  We got there and it was closed.  I said how sorry I was and it was a bummer.  I used my (sincere) but sad voice and got hit.  Just saying “no” and moving on is better.

It’s generally better to avoid her.   I need to step in when I know I’m going to be successful and not get hit.  We have 14 years to re-shape.

Going up to her at any given time and hugging her and telling her I love her.   Yea, that doesn’t thrill her.  So am I doing it for me?  Or her?  I don’t want to spark an aggression so I’ll just love her from afar!  Or wait for her to initiate a big ‘ol hug for me!

There are a million more examples.

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But to sum it up.  My parenting with her is nearly the opposite of what I have to do with my ‘neruro typical’ children.  For about .05 seconds a day I feel very sorry for myself.  The rest of the day, I’m so grateful that I’ve figured it out.  Because clearly, I wasn’t doing a great job for the last 14 years (well, I did fine.  The best I could under the circumstances, but it will be better now.)

So the next chapter in our saga is her transition home!

Thank you for reading!

Kelli

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Kelli (mom) implements the behavior plan. Success does not ensue.

Mom training

We’ve reached the point in Issy’s treatment where we need to bring in the parents to do the behavior plan  so Issy can transition home.  This is a bit of a process so we’re starting several months before her expected release date.

Issy has been following the behavior plan at The Great Lakes Center for Autism Treatment and Research for many months.  Successfully!  The numbers of aggressions has gone down significantly. Yay Issy!!

So I (mom) show up for my first “hands on” day with her.  Just so you understand, I’ve been visiting Issy once a week and only had a few problems.  I also had two seperate trainings on her behavior plan, and watched it implemented by her staff.

I was ready!

Runner Crouching at Starting Line

And excited.  The sooner we get through this step, the sooner she can come home!

Carly, Issy’s behaviorist, was there to make sure I said and did the right things. Basically, I just had to give her tokens for having ‘quite hands and feet’ and redirect her when she started perseverating (you know, getting stuck) on certain topics.

We walked into the classroom.  Issy was so happy to see me (and I her!).  I told her I was there to be her worker.  I sat down next to her and started to work on a coloring page.  Issy started perseverating, I redirected.  She got physical…

The following is the video from that incident.  I’m the one with the blonde hair.  Carly is the behaviorist.  Thankfully Issy had one of the bigger, guy workers (I’ll refer to him as J).

The video below has no sound.  Thankfully!

Poor guy…

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I retreated to the corner and refused to look so I wouldn’t reinforce Issy’s aggression.  I’m here to tell you that Carly and all of Issy’s workers are superheroes.  Honest to God.  They were both bleeding before it was over.

They are true professionals.  Carly kept asking if I was all right.  I was.  She was bleeding and her adrenaline was kicking in.  As professional as she is, I can tell she isn’t used to getting attacked.  I feel so horrible and responsible for Issy’s behavior.

I just want to mention that they never got mad at Issy.  Never yelled or screamed at her.  Just reminded her that she could earn tokens for ipad time when she had quit hands and feet.    Did I mention that they are superheroes?!

Well,  we’re about to do another mom training.  I’m hoping it goes better (it has to, right?!).  I’ll let you know!

Thanks for reading!

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Inclusion: Doing It Right.

I don’t mean to brag or anything, but I’ve successfully botched almost everything I’ve ever done!

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The exception was how we included Issy in a classroom for typically developing kids.  There we had EPIC success.  This is how we did it:

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Issy started Kindergarten in our local school district.  She would spend part of her day in the classroom with her typically developing peers and part of the day in the resource room.   We identified several girls who would be her “friends”.  These girls are the little “mothers” of the class.  The ones who are always helping other kids.    These little girls are also “pleasers”, the ones who work hard to please the teacher and other adults.  At this age, so many little girls are like this (boys too).

We asked the girls to be “Issy’s friends” and contrived situations where they could help Issy.  This could be getting an item, or helping clean up or following her when she is doing a task.

issy friends

Here is the important part.

Are you ready?

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We enthusiastically told the students, “You are such a good friend to Issy!”  And they really were being good friends!  We tried to tell them that as much as possible.  We were encouraging “good friend” behavior.   We told them this when they were actively helping Issy.  We told them this just randomly (like if I saw them at a football game).  The kids took great pride in being Issy’s friend.  And heck, shouldn’t we all take pride in our friends?!

It wasn’t long before nearly all of the students of the class were being good friends to Issy!  They all knew she was autistic.  However, they didn’t know that it was a bad, sad, or terrible thingThey thought it just meant she was special.  And she is!

Another thing we did right was involving the oldest kids in the building as “Issy’s helpers”.  There were a handful of sixth graders identified to be “helpers”.  They would mainly help Issy at recess.   The awesome thing about 6th graders is that they still want to swing on the swings and play games.  They helped Issy and sacrificed some of their own lunchtime.  What little superheros!

School-Girl

Matt and I always made a point of thanking these older helpers for being a “good friend” to Issy.  And guess what?!  They appreciate the compliment as much as the kindergartners.

Because we live in a small town, we knew many families with kids that were neither in Issy’s class or a 6th grade helper.  So guess what?  When we saw them in the hall we said “hi” and if they said “hi” to Issy we would encourage her to give them a “high five” and then we would tell them how what good friends they were for giving Issy a “high five”!  They would beam with pride!  So would I!!  A whole building full of awesome kids!

As the years progressed, Issy learned the name of every student in the school; their birthdays, their sibling’s names, their pets’ names, and what instruments they played. (It’s an autism thing! Also, it’s exactly what a good friend knows about other good friends!)

At the end of the school year, 5th graders would ask the 6th grade teachers if they could be one of Issy’s helpers next year.  It was a highly coveted position!

The best part, the very best part…. When a new student moved into the area, they would meet Issy (because clearly she isn’t “normal”).  When the child would make a funny face and say something like, “What’s up with her?”  The kids would respond,  “That’s Issy.  She’s cool” and suddenly, the new kids accepted her like everyone else.

I told you.  We really did it right.  The kids did it so right!

So if you’re an autism parent or a school employee, all you have to do is reinforce “good friend” behavior.  You can use phrases like this:

“I really like how you helped Issy!  What a good friend you are!”

“That’s awesome how you sat with your friend Issy today!  Good job ______!”

“I loved watching you and Issy play!  What great friends you are!”

When Issy was in 6th grade herself (and no longer needed a helper) her behavior became erratic.   Things began to change.  Her friendships and all of our hard work were compromised.   It seemed as though the adults in her life couldn’t help her anymore (Matt and I included).  We eventually had to place her at a school where there were no more typically developing peers.  She regressed.  She didn’t like it.  She didn’t have friends.  She was picked up at 5:30 in the morning to take a 2½ hour bus ride (one way) for school.  Beyond heartbreaking.  I can’t even begin to tell you all she lost.

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I never thought about reinforcing the behavior of adults.  Isn’t it amazing that we are not as accepting or willing to help other kids or students as much as “Issy’s helpers”?  Maybe we could all take a lesson in this learned behavior from these kids.  Maybe as adults, we need to reinforce “good” or “appropriate” behavior with each other.  We all need to be appreciated and complimented.

Issy has had many teachers and adults in her life that understood what it takes to help her be successful.  There have also been adults (her dad and I included) who have let her down.  Many, many, times unfortunately.  In so many ways, “Issy’s friends” have been the real leaders as far as inclusion, understanding, and support.   I told you we did it right! (with the young people)

My heart has been simultaneously warmed and broken when Issy’s friends ask me how she is.   They REALLY love her and they REALLY are her friends.

When we recently hit a crisis with funding, the students at my husband’s school (he is the principal, head football coach, jv basketball coach, athletic director, and anything else that needs to be done) made this video.  All of the kids in this video are Issy’s friends.  They were the kids that worked with her or were just nice to her.  They were her helpers.  Grab a tissue.

She is currently doing well in treatment.  So well that we’ve begun to plan for her transition home.  It will take several months, but our hope is to have her back when school starts.  I can’t wait for her first day back at school.  She’ll be in her dad’s building with all of her friends, and her brother and sister.  It will be both a happy ending and a great beginning!

Really, I’m more excited than normal for school to start in the fall!  And trust me, I get excited for school to start!  Here we are last fall!

If you have a child with autism, you KNOW how hard summers can be.  I literally count down the days for school to start!

If you have a child with autism, you KNOW how hard summers can be. I literally count down the days for school to start!

My take home message to you is this: Reinforce the relationships you want your child to have.  Teachers, friends, and siblings (yes, we say things like “you are such a good sister to Issy”) and adults, all of us need to be reinforced.  Trust me.  It works!

Smile big and tell them you like how they are (insert verb).  It works!

Smile big and tell them you like how they are (insert verb). It works!

Good luck and thanks for reading!

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Meaningful Work

I had lunch with two of my bffs, Vickie and Wakako.  They are both amazing women and it was bliss to sit and have a grown-up lunch with them.

Pleasure-Lunch-Friends

At some point in the conversation Wakako asked me:

Wakako: What’s Issy going to do when she gets older?

Me: Well, she will be home.  She can’t have a job. Can you imagine the first time her boss asked her to do something she didn’t want to do?!  I really just want her to be happy.  I guess she can watch movies ands surf youtube…..

Wakako.  Well, I think she can to do something.  She can do something that’s meaningful AND contribute to society.  I don’t know.  Maybe a chocolatier?

Me: I guess she could learn to melt chocolate and pour it into molds.  I could have her sell the chocolates to the local stores.  Maybe?

Wakako:  Well, that or something else.  You’re just going to have to pick something for her.

Me: Pick something for her?  Like a career?

Wakako:  I’ve had students that were “typical” but extremely indecisive.  I told their parents to just pick a career for them.  If they changed their mind later, fine. But at least they were working toward something rather than just fumbling through different courses in college.

Me:  Well, Issy’s smart.  She can learn ANYTHING!  She’s only 13…. so if we started working on skills now, well heck, she would be able to do millions of things!

That moment Wakako  seriously changed my life!!! I was so excited! I didn’t sleep a wink that night.  I was going to find “meaningful work” for my daughter.  It was time that she started a “job”.

In ‘normal’ life, most 13 year olds do not have jobs.  However, most of them do homework or participate in sports and/or any number of extra curricular activities.  Issy however, doesn’t do any of those things.  But instead of those things, she will have “work” or she will go to her “job”.

A huge problem we have with Issy, is boredom.  She just doesn’t enjoy that many activities.  Sure she loves to go to the water park but clearly, we can’t do that very often.  So she has a lot of time where she is just hanging out at home.  The more unstructured time like this, the more we see her behaviors.  During the weeks she is busy with school. On Saturday she is really happy to just hang out at home watching videos or playing on the ipad.  But by Sunday, she wakes up full of rage.

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Is it because she is board?  Is it just a habit that she has to rage on Sundays?  We’ve tried to structure Sunday’s but failed when we tried to take her to church (she had a melt down. I was hit several times. It was horrible for the congregation to see.). We also live an hour away from a shopping mall or fun activities like a bowling alley or large movie complex.  Sundays are just bad news for us.

Back to my point, Issy will now have to do work daily.  It is going to be a part of her schedule just like going to school is.  In fact, she will go to school ride the bus home, have a snack, then go to work.  Just like other kids go to sports practice or whatever.  She will also have “work” on the weekends.

“Work” will be in a different place than home.  Our church offered the use of one of their rooms.  She will go to work, stay for a reasonable time, and then come home.  “Working” will help structure her time and may even give her the opportunity to earn her own money.

Currently, Issy is in residential treatment.   I told the behaviorist about Issy’s “work”.  They are incorporating Issy’s “work” into her daily schedule.

So what did I decide to do for Issy’s meaningful work?

Ready for it?

Drum roll…….

crafts

Yes, crafts.

meaningful work

She will be able to make crafts that we can sell at our two local art fairs in the summer.  I’ll also set up a website where she can sell her crafts. Maybe someday we can purchase a craft tent for shows and/or maybe eventually a building for her work in!!  Who knows?!

So for now, Issy’s work is using this paper punch to punch out pretty scrapbook paper, fold it into an envelope and use a small piece of double sided tape to secure the envelope.

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I doubt that there is much demand for a large number of mini envelopes.  I’m thinking that we may not do any craft fairs this year.  But the point is that she is learning to use the double-sided tape (she has to be careful and only use a small piece), she is using a paper punch, and she is doing SOMETHING.  There is great value in her just doing something.

So I’m on a quest to find crafts that Issy can do, but not childish looking craft projects.  So please comment if you have any ideas.  Oh, and have you SEEN PINTEREST!?!?!  I’m getting some great ideas there.  I even started an Issy board!  Let me know if you want permission to pin to it and I’ll add you (and be forever grateful to you).

I don’t know that Issy will do crafts for her entire life.  At 13 years old, and starting now, she may develop into quite an artist.  Or maybe we’ll switch over to making candies and chocolates.  She may, at some point, be able to tell me what she wants to do.  Can you imagine that day?!  We would turn the world upside down to offer her any opportunity she wanted.

So what about ‘meaningful work’ with your children?   Have you thought about it?  What have you decided to do?  I would love to hear your ideas and feed back.

Thank you for reading!  This is a picture of me giving you all double high 5’s!!!!!

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What exactly is Issy’s therapy?

So what is this magic they are working on my daughter?

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Two years ago we had a behaviorist who recommended starting a ‘Token Economy’ system with Issy.  Basically, she earns tokens and then gets to turn in her tokens for something great.

We had a 6 piece puzzle.  Every 30 minutes that Issy didn’t hit she earned a puzzle piece.  When she had a full puzzle I would take her for Ice cream (or give her a nail polish, or let her watch a video, etc).

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The problem was, that Issy didn’t understand any of it.  She couldn’t go 30 minutes without hitting.  She never earned a puzzle piece, much less an ice cream.  It didn’t mean anything to her.

So fast forward two years and now picture this scene……….

I have Issy at the treatment center.  I’m in a meeting to learn two things:

1.)  Why she is hitting (Is it for attention? Does she like to look at tears?)

2.)  What the Behavior Plan will be

They were able to tell me that her aggression comes from not getting something she wants or not being able to do what she wants.  In other words,  she can’t tolerate being told “no”.

Next the behaviorist said, “We will be using a token economy system with Issy”.

*Stunned silence*

This is a  state-of-the-art facility.  Cutting edge.  Teeming with behaviorists and they’re about to break out the puzzle pieces. Really?

I cried.

With blubbering and snot.

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I already knew this wasn’t going to work!  However, being the consummate professionals they are, they did not let a blubbering mother tell them how to do their job.  The behavior plan would start the following day.  Whether I was on board or not.

 StartLine

Let me pause here to tell you a little about me.  Before I started having children, I worked as a scientist.  I worked as a molecular biologist mapping genes on two projects and as a scientist at a pharmaceutical company.  You have to be smart to be a scientist, right?

woman scientist

I’m an idiot.

And let me tell you why.  I’m an idiot because I thought that the ‘loosey goosey’ token economy system I did at home two years ago would be similar to what would be done at this highly structured residential facility teeming with behaviorists.

*face palm*

So let me tell you about this Issy’s token economy system.

Every two minutes a timer goes off and the worker says something like, “Issy, you had good hands and feet!  Great job!  You get a token!!”  She gets a token and puts it on her token board.

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(tokens are round cardstock pictures of Miley Cirus, Taylor Swift, Justin Beiber, or Dora, to name a few.  The token board is a very think piece of cardstock or maybe even a piece of cardboard covered in Velcro dots.)

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Every two minutes, with a timer.  Seriously.

Every 30 minutes they tell Issy that it’s time to go to the “Issy store” where they have a big rubber maid tub full of coloring books, nail polish, brownie mix, and other things Issy likes.  Oh, and also “free time” cards.  She trades her tokens to buy 5 minutes of free time to watch a video or play on her ipad, or she buys a favored item.

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As my best friend Yvonne said, “Hey, that girl gets to buy time?!  Sign me up!”

Now let me brag about my little girl for a minute.

She is so smart.

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A coloring book is 55 tokens.  She loves coloring books.  She totally understands that she has to save up tokens to get the coloring book.

She gets extra tokens for doing her classroom work.  So guess what?  SHE ASKS TO GO INTO THE CLASSROOM TO WORK!!!!

She is very good at math so this is all easy for her.

What happens if she hits someone?  The timer stops and won’t start again until she has quiet hands and feet.  They never take tokens away.  They don’t yell at her. They don’t tell her over and over again not to hit (ahem, *hangs head in shame*).  They just constantly remind her that having quiet hands and feet will get her tokens.

So everything at the Great Lakes Center for Autism Treatment and Research must be rainbows and puppy dogs, right?!

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NO.  Remember what I talked about in my last blog post?  Extinction Burst.  We can expect these behaviors to get worse before they go away completely.

I saw a video of her in treatment having a MASSIVE melt down.  They call it “high intensity”.  I call it ‘holy sh!t scary’.  I’m very glad the extinction burst is happening there and not at home.  Wow….

Let me talk about home life for a minute.

Issy was not happy at home.  She pretty much would sit in her room playing on the ipad.  She would only come out to rampage.  She wanted to visit someone, or she wanted McDonalds, or she wanted ‘Revlon Red’ nail polish.  We provided, pretty much, whatever she wanted.  We would say, “Good talking!  Or Good asking! And promptly get her the McDonalds, or whatever she asked for.

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So maybe by us reinforcing her language, we were also reinforcing the fact that we really didn’t tell her “no” very often? And she expected to get things more than other children???  I think this is a good ABA theory question.  Anyway, I’m sure I ruined her somewhere along the way.  Oh, the mother guilt! (and before some of you get too excited about blaming me, please note that I have two neuro-typical children who are told “no” frequently and do not hit.  Also, they are incredible children with good grades and lots of friends. So I’m not a total mother failure).

Back to the point.  She wasn’t really happy at home.  It felt like we were just biding our time between outbursts.  Also, our parenting became very unnatural.  We were tap dancing around actually saying “no” to avoid meltdowns.  We were also dancing around known triggers for her.  Heck even her siblings would do that.  Who exactly in this house, was shaping whos behavior?!

tap-dancing

Is she happy at the Great Lakes Center for Autism Treatment and Research?  I don’t think so.  She is very homesick.  She misses her cat.  But I do think that she has the ability to become happy there.  Issy is a very good learner.  She will learn to look forward to earning her tokens and getting fabulous rewards with them.  This skill can transfer to home as well. We can teach her to be happy using this system.  And besides, can you think of a better or different way to teach her to be happy?

Remember how I said they set the timer for every 2 minutes?  Well, they have spaced that out to 10 minutes!  Still very intensive but who knows how far they can stretch it out before she is allowed to return home?  She may come home at the beginning of April or begin to transition home in September and be home for good by November.  All of this depends on funding.

Please understand that I just plunked out the basics of this system.  There is more too it.  A lot more.  They throw in some monkey wrenches to challenge her and use some self-calming skills with her too.

Warning!!!!

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If you are dealing with problem behaviors, do not try to set up a token economy system, or any other system for your child.  Because the only thing worse than no behavior plan, is the wrong behavior plan (remind me to tell you about the behaviorist who told us to encourage Issy to hit when she was mad.  Yes, for real.  That’s why your behaviorist must have a behavior team or supports backing them).

Thank you for reading!

Oh, I almost forgot!  For your watching enjoyment I’m showing you an actual tap-dance video! This is me and Issy dancing side by side!

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Day of Reckoning

This is the day that Issy would have been released from the treatment facility.  She has been in for 30 days.

Conflicted and grateful is the best description of how I feel.

Conflicted: 

troubled

I’m so glad she is getting treatment. So very glad.

I miss my baby so much. She spends her days and nights with people who are working with her, but they don’t love her.  All children should see someone they love EVERYDAY.  We see her once or twice a week….we all miss her.

Grateful:

grateful-heart

My last blog post got a lot of attention (you can read it here).  Because of it, state politicians know about our case.  The insurance providers know about our case, and we are getting media attention.  The most amazing thing of all is the incredible amount of donations.  Let me just say for the record that Matt and I were completely against taking donations.  Really, our CMH or the state or BC/BS insurance should be paying for this because we pay in for services.  However, we can’t really be too proud.  She only has 30 guaranteed days and we need more.  Many more.  Friends, family, and friends we haven’t met yet (a better term than strangers) have donated for Issy.  Incredible.  One person donated a whole day! That’s $760.00!!  Another donated $1,000.00.  Can you imagine!?!?  We are so overwhelmed… so humbled….so grateful.

To date donations are enough to pay for another 20 and 1/3 days of treatment.  With the 30 days (I’m going to do some math here.  I’m blonde so be patient…)

That is 50 days of treatment!!!!

50 days!

50 days!

Now… let me talk about my daughter!!!!

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When Issy was 7. One of my favorite pictures of her.

Through something called a “functional analysis” they can figure out why Issy is being aggressive.  Is it because she is trying to get out of something like school work or chores?  Is she trying to get attention?  Does she like to look at tears (I mention this because she looks at you tube videos of crying babies a lot!) ?

2011-02-27-NO

What they learned was that Issy can’t tolerate being told no, or not being able to get what she wants.  Um….. Sound like every teenager on the planet.  Amirite?!  But add in her autism+ hormones+ whoknowwhatelse = aggression several times an hour (yes, an hour.  Remember the video in the last post?)

More math:

Autism+hormones+whoknowwhatelse=a large can of whoop ass

whoopass

When a normal beating just won’t do

So now we know!  And this is a completely fixable problem.

Now let me tell you about an extinction burst.  I googled for an example and google did not disappoint:  The following is copied from here—->  http://www.shirleychong.com/keepers/archives/bursts.txt

If someone’s gained some reward every time for a particular behavior, the behavior will persist.  If suddenly the reward stops coming, it’s likely that the person or animal will not immediately give up the behavior. Instead, they’ll try it again and again, harder, faster, more emphatically.  It’s a burst of activity.  If the reward still doesn’t come, eventually the behavior will extinguish, or become extinct.  So, the burst of behavior before extinction of the behavior is called an “extinction burst”.

My favorite example is the elevator button.  Let’s say you ride the same elevator every day.  You get in, you push the button for your floor, and you’re rewarded by the doors closing and the elevator taking you to your destination.  One day you get in and push the button, and nothing happens. Do you immediately say, “Oh, this must not work anymore, I’ll just take the stairs to the 11th floor”?  Or do you push the button again?  And again? And harder?  And faster?  And in special sequences?  That’s the extinction burst.

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OK, so Issy is at the facility for three weeks and they are seeing her problem behaviors.  And some of them are the start of extinction bursts.  That’s great! Only problem is she is due to come home in a week.  If her aggression is going to get worse, perhaps much worse (Picture the elevator), she’s doomed.  Seriously, we are all doomed.

The treatment center is asking for is a little more time….because they feel they can help Issy!  She just needs more time.

In comes the Michigan Education Special Services Association (MESSA) who provides our insurance. They oversee our benefits like insurance.  They aren’t really insurance, but you can read about them here.

TIME:

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Even though our BC/BS insurance will not cover any of Issy’s treatment, this association offered to pay for two more weeks of Issy’s care.  TWOMOREWEEKS!!!!!!!

Meantime, at the facility: They have seen Issy’s behaviors (she has injured three of their workers, destroyed all of her personal property including a flute and ipad, plus broken two of their phones).  They estimate that in a perfect world Issy would need possibly up to eight months of treatment.

More math:

30 days (paid by Medicaid and CMH)+20 days (paid by donations) + 14 days (paid my MESSA)= 64 days of treatment.  Fabulous news right?!  Yes!!  We are beyond thrilled.

But

The facility recommends 240 days.  After my recent visit to the treatment center and based on the data I saw, I think her treatment will be somewhat under that (we hope) but it’s going to be significantly more than 64 days.

We are reluctant pioneers

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In a phone call with my MESSA advocate, she called us “pioneers” because people will be coming after us and hopefully getting the treatment they deserve.  Already, so many parents have contacted me with our EXACT story!

Big high 5s and hugs if your life is a Pat Benetar song.  I know what you are going through.  YOU ARE NOT ALONE!!!  There are many of us trying to help our children. Stay strong.  Help is coming!

Relavent:

First and foremost, I need to get Issy’s full treatment financed.  Secondly, I need to be very loud about how this is done.  Thirdly, I need a big audience because it will be hard to deny a little girl treatment if the world is watching.  Fourthly (is that a word?) anyone who is living this level of aggression needs to be able to ask for help and GET IT!!!!  These are PROBLEM behaviors.  Not “annoying” behaviors.  Not “pesky” behaviors.  Not “typical” behaviors.  These are OHMYGODHOWDOPEOPLELIVELIKETHIS  behaviors.  I never want another parent to have to tell this horrible story.  Put themselves “out there” for criticism and back yard quarterbacking (just look at some of the comments on my blog!).

If you are dealing with problem behaviors you should be able to get help.  Your local doctor should know who to call, your local school should know who to call, your local community mental health, should know who to call.

Our story has gone viralish.  We have a lot of attention.  But in order for this to really make change, we need more.  Please share our story.  Share with your politicians, medical professionals, journalist, favorite websites, favorite bloggers, favorite celebrities.  If one celebrity notices and does something, the world will change for families like ours.  Please help.

And FYI, if you contact any of the above people, be sure to include your contact information so they can reach you.

Please help me make sure the world knows and watches.  Spread the word on twitter and facebook.  I created this little picture to help get peoples attention:

teamissy

Facebook: Team Issy 

Twitter:  @TeamIssy

Jesus: Issy Stapleton

The donation page is here, if you would like to donate.  $3 is 6 minutes at the facility.  Every minute counts!  Thank you so much http://elberta-alert.org/please-help-issy-stapleton/

Thank you for reading….  Go team Issy!!!!

p.s.  Our local NPR station did a story on us.  If you would like to listen you can find the show here—> http://ipr.interlochen.org/ipr-news-features/episode/benzie-county-mom-goes-public-her-struggle-help-violent-daughter/2013-02-0

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Dancing on the edge

I didn’t intend for this blog to be all about autism.  But like everything else in our life, it just dominates.

Our daughter is in a treatment facility for 29 days.  Let me mention that the facility is UBER expensive at $765.00 a day.  So many friends have offered to fundraise for us.  How to explain that if everyone I knew gave $100 it wouldn’t be enough….?  I’m grateful for the 29 days.   But she will be released in a week-ish.  She has started her behavior plan.  And as expected, she is becoming more aggressive (always gets worse before it gets better).  Just in time to come home.

This is what happened to me the last time she was aggressive:

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Black eye in the EXACT same place as the previous black eye.

And a week before that

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Level 2 trauma. Closed head injury.

Here is my youtube video of a typical day:

Some background for the video: She had just hit me and pulled my hair.  She had thrown diet coke and water all over the kitchen.  I was in the process of trying to get it cleaned up and to stop crying when…..

I have talked to doctors, psychologists, lawyers, insurance companies and no one is helping us.

Let me give you a little background:

We started an ABA program with her when she was two (that’s INTENSIVE behavioral intervention).  We stopped when she was five since she was in typical school full time (yay Issy!!).  For those of you who know the lingo we did ABA, two years of GFCF (not a diet responder), DSMA, all the supplements from the Kirkman catalog.  We’ve also done auditory integration, RDI, Sensory Therapy, OT, ST, and an exorcism (the last one is a joke).

She had problem behaviors (hitting), directed mainly to me but sometimes her little sister too.  Our local CMH (community mental health) provided a behaviorist.  She worked on our case for over two years without supervision.  I did everything she said and Issy’s behavior got worse.  I begged her to consult someone.  She finally suggested I put Issy in foster care.  No, we’re not going to do that because she is OURS AND WE LOVE HER!!!

Sooooo, now I’m calling around the state looking for a behaviorist who will take our case.  She is now 10ish.  She had a huge meltdown in the car.  I pulled over and called my husband to come and help me.  I was on the highway and I didn’t want to get out of the car because I was afraid Issy would get into traffic.  My husband found me crying and I lost consciousness.  I was transferred from our local hospital to a neighboring town because my pupils were not reacting to light.

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We hired a worker to help with Issy.  She was great until she told us she was pregnant, said Issy hit her, and said Issy caused a miscarriage.  Then we sent Issy to a state mental hospital for a week thinking she killed a baby.  Only to learn that the woman had made up the pregnancy and miscarriage to get attention from her boyfriend who was living out of state.  I testified in a deposition.  We are all scarred for life.  FOR LIFE!!

Still, we continued looking for behaviorists.  Found one in Grand Rapids.  She agreed to take our case.  But she got sick and quit or was fired.

So that brings you up to current time.  You can read my past posts about how she got into residential care.

I also want to add these tidbits because I’m actually feeling a little sorry for myself.  I think I’ll just put them into bullet points

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I Googled “Refrigerator Mother” and Google did not disappoint….

  • I was accused of working too intensely with Issy when she was two by her speech therapist
  • A family member told me I didn’t read to her enough as a baby.
  • I was told by a social worker that my intensity “exacerbated her aggression” and she recommended parenting classes (she had never seen Issy and had never been to our house to see me parent)
  • I’ve been begging and searching for help for YEARS!  No one (not insurance companies, doctors, or social works) suggest anything.   NOT EVER.

And a little bit about us personally.  My husband has a good job and has great benefits.  But through loopholes and other nonsense, we can’t get help for our daughter through insurance.

We are the type of people to pay their bills. (but our credit is shot to hell because of the money it cost for early intervention, playing the credit card shuffle and re-finance game.). Our car broke down tonight.  We won’t qualify for a loan. *sigh*

I would also like to mention that we LOVE our disabled daughter very much.  But you should know that living with her is beyond horrific.  There are screaming tantrums, property destruction, hitting, biting, pulling hair, and kicking.  It’s always loud and we’re always tensed up to take a blow.

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But what about HER!?!  Our daughter deserves a chance to have a happy life!  She is completely trapped in her aggression.  She is so special and has gifts to offer the world.  But we will never be able to reach her full potential as long as she is trapped in this aggression.

I know you may not believe me, but she was the most popular kid in her school.  Everyone wanted to be her friend.  Her classmates were both friends and helpers.  We’ve had a ton of students babysit her over the years or work as therapists and they LOVE her.  And she LOVES them!!

The last straw =Friday February 1st 2013.

I was contacted by the insurance company that provides my husband’s benefits.  They wanted to look at our case.  The woman I spoke with is an advocate.  Beyond AMAZING.  She took our case straight to her superiors (time is of the essence, our little girl is scheduled to come home soon!!).  They would have the ability , the money, and the power to APPROVE HER TREATMENT.  I knew she was going into a meeting with decision-makers at 2:30.

She was going to ask for full treatment for Issy to be covered (around 3-4 months TOTAL) as a money saving opportunity because my next head injury could be far more expensive than her residential treatment.

Makes perfect sense to me!

She called me after the meeting.  She said, “Issy wasn’t denied outright.  They want more information.  You will be contacted by someone………”

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I fell apart.

I crossed the line.

It’s the last straw.

Desperate times call for desperate measures.

I’m tired of her autism robbing her of a life.  I’m tired of it taking all of our resources (time, money, energy, everything).  I’m tired of dying slowly with each traumatic brain injury.  But mainly, I’m so DAMN MAD at watching my husband, a good man, work hard and never get ahead.  He can’t keep his family safe, and he can’t fix his broken daughter.  He deserves to come home and hug his family, pay the bills, kick the dog (that’s a joke) and do what good men do.

Our other children deserve all the time they haven’t been able to get from their parents.  All of the attention they deserve.  All the help with their homework they can use.  They are AMAZING.  They deserve to have a childhood.

That poor woman who called.  She had no idea when she called me to give me the “not so good” news that I was dancing so close to the edge.

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What do you do when you’ve done all you can do?  When every decision is out of your hands?

I understand why prisoners go on hunger strikes.

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I understand why Tibetan monks resort to self immolation

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So please:

Share with any television reporters you know

Share with any newspapers

Share with any lawyers

Share with any legislatures

Share with your favorite celebrity

Please PLEASE share this with ANAOMOUS if you know how to find this group

Thank you for reading,

You can find me on Facebook here—> http://www.facebook.com/pages/Kelli-Stapleton-The-Status-Woe/441514065886958?ref=hl

Team Issy has a Facebook page if you want to keep up with the developments. You can find it here—> http://www.facebook.com/TeamIssy?ref=hl

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