The Status Woe

Rising above mediocrity one mishap at a time

Can you help?

Dear “Friends of Kelli,”

While visiting with Kelli this weekend, we realized it’s been 9 months. In the past 9 months we have learned even more about what an amazing person Kelli is and how much she is loved by her family and friends. In the past 9 months Kelli has faced significant personal challenges besides being incarcerated. As her friends, it has been hard for us to watch her go through such a difficult time in her life while remaining helpless. We support Kelli to remain hopeful and then there are days when she supports us to remain hopeful. Kelli wants us to thank everyone who has so generously offered words of support, donations, and action on her behalf. She feels lucky to have people in her life who are willing to remind her she is worth it and she is loved!

As the trial grows closer, we continue to struggle with the financial aspect of this situation. Right now we are seeking funds to hire an expert witness we believe will give important insight to the judge and jury at her trial. Currently, Kelli has no assets to speak of and we are growing extremely concerned about her future without this expert witness. The charges against Kelli hold a maximum sentence of life in prison with the possibility of parole. Our friend has been broken for a long time. We all know Kelli has struggled with her daughter’s continued aggression toward her and her family. We know how hard she fought in attempts to give her daughter a better quality of life that included community support and a home free from aggression for her family. No family should have to struggle as much as Kelli’s family has. Since she has been gone, her daughter continues to struggle with the same aggression, the only difference is there is only 1 parent left to coordinate her care while continuing to raise their other two children.

OUR FRIEND NEEDS OUR HELP! We currently need to raise funds in EXCESS of $20,000 for an expert witness crucial to Kelli’s defense. All donations make a difference whether you are able to donate $20 or $2,000! Please give what you can, share on your blog or website, and pass it on to those who can also help. Below is the link for donations. Feel free to copy the donation link. If you’d like a paypal button for your blog, please email us at kellistapletonfundraiser@gmail.com

Click the link below to donate online. You do not need a paypal account to pay by credit card, just click the link on the page to the left that says to pay without a paypal account.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=FT765MLU9TM7L

You can also donate by check or money order by mailing a check in Kelli’s name to the address below. All funds raised go to Kelli’s personal account.

If you would like to donate via check, please make it out to Kelli Stapleton and mail it to:

PO Box 58, Frankfort, MI 49635

PLEASE help our friend Kelli…she needs our love, support, and a strong defense.

Please give what you can.

Thank you so much.

~Marlowe and Vickie

P.S. One of Kelli’s friends has taken action to get the ‘postcard only’ decision by the sheriff overturned. She was successful! Kelli can once again receive regular (PLAIN) letters! So keep on writing!

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When a power player takes you down.

If there is anything I’ve learned in my relatively eventful life, it’s that I’m not special or unique.  If something has happened to me, I know it’s happened to someone else.

I have to admit that I’m suffering from a severe case of battle fatigue.  I’m so happy that Issy has successfully completed treatment.  It was a miracle making that happen.  But I never once had any peace or rest.  There was a constant (and very real threat) that funding would be pulled.  It was not as exhausting as getting my ass kicked (literally) every day, but there was no time to lick my wounds while she was in treatment either.

Warrior Woman Silhouette

Managing her transition back into “normal” life has been complicated.   The behavior plan is reducing her target behaviors.   The behavior plan is our miracle.  So how do we best ensure the integrity of the behavior plan as we transition home?

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Home: We obtained the single opening for the Michigan children’s waiver for the whole state!  So Issy has funds for staff at home.  Her very own human for nearly all of her waking hours!  Can. You. Imagine?!   I found a staffing agency that has been following Issy’s story, wants to help her, and is thrilled to take the training. They know the behavior plan, and are working hard to understand it and implement it perfectly.  Seriously, there is no room for any mistakes.  They get it.  And as silly as it sounds, you know someone will be successful when they work not for just a paycheck, but they really invest in the program.  That’s what I’m feeling here.  They are asking great questions of the behaviorist and learning a lot in the process.  Things that may help other clients too! Win/Win!!

School: School won’t be a problem.  Issy’s daddy is the principal of the building.  He knows all of the key players and Issy will have her own aide.  Her very own human there too!  Her aide can be trained in the behavior plan (although not difficult, there is a lot to it.),  mom (me) plans to send all of the flash cards, pictures, Velcro boards, and workbooks she has been using, to the teacher (if you’re an aba or vb person you know what I’m talking about.  Crates and crates of work, amirite?!).   She will spend time in classes she can participate in like PE, gym, art, etc. and do the more difficult academics with the aide in a quiet room  where she can be reinforced appropriately for a non-preferred activity (in real terms: she will get a sh!t load of tokens for working hard and not losing her mind over a math problem).  Community volunteers have offered to come in and teach her tap dancing, oil painting, and cake decorating! Did I mention I live in a great place?  And our school is full of awesome?

 Work:   Our local church is providing a space in there building  where she goes to “work”.  They are giving us a key and everything!  So after school Issy will go to “work” when her siblings are participating in sports.  I talk about it more in this blog post here.  Basically it’s just crafts.  But I hope to find something she enjoys and is good at.  I can then build a  website and sell her work.  Or maybe we’ll figure out something totally different.  Either way, she is going to “work” everyday.

It’s all coming together….

It's all coming together

It’s all coming together

I mentioned battle fatigue earlier.  Well…….I made a huge tactical error.

Several weeks ago, the special ed teacher that Issy will have in her home school district requested to the superintendent that Matt (Issy’s daddy and the building principal) be taken out of the professional loop since he is a parent.   I get it.  He needs to make decisions as a parent. You wouldn’t have a doctor do surgery on their own child.  Right?

This week the special ed teacher came to the same behavior plan training meeting as my home staff.  It was clear within the first hour that there were going to be problems.  She was trying to come up with ways to tweak the behavior plan so that would fit smoothly into the school schedule. I get that too.  She has other kids to worry about. However, we are NOT FUCKING WITH THE BEHAVIOR PLAN.   She was also not on board with me providing the work for Issy.  When we were alone, we had a very heated discussion.  And by heated discussion, Imean  we were both yelling.  She even yelled this gem: “your husband is my boss, not you!” .  However, there was no swearing (win! Remind me to tell you about the time I told the clinical director of our cmh to “munch my c*nt”.  Not my proudest moment but I was pretty mad.  And I’m not entirely sorry I said it.)

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When it was time for the meeting to resume, she wasn’t there.  She decided not to finish the training.  While the rest of us were practicing the behavior plan, she was making phone calls.

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The next morning, my husband and I were called into a meeting with the school superintendent and a representative from the intermediate school district  (the ISD is what provides supports for special education students in the local school districts).  Because my husband was taken out of the information loop (remember he is the building principal), we weren’t sure what the meeting was about.  We thought it was to work out the obvious kinks we were going to have since I clashed so badly with the teacher. Talk about options and how to make it work.  But no.  The meeting was to tell us that Issy was not going to be allowed to go to school there.  Quite coincidentally, the ISD representative used some of the phrases that I had used in the argument the teacher, so I think I know where that info came from.  The ISD representative suggested I home school, and mentioned that I was “intense” (I get that a lot).

So less than a week before school is to start, she is uninvited.

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I am devastated.

My husband is gutted.

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My husband is an administrator, sure, we never expected or wanted special treatment.  Only to follow the behavior plan from the behaviorist and throw some flash cards in front of her (not playdough, she is a smart kid.  Time to work on science and other subjects).  Just for everyone to do their job.

What exactly is wrong with a doctor performing surgery on their own child?  Is there a large sample size of doctors doing such a thing?  And if so, what did they find?  The doctors weren’t careful?  The doctors took short cuts?  The surgical staff was more likely to treat it like ‘party time’ or be more serious since it was the doctor’s child?

I have ruined everything.  I should have stroked egos.

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For 12 years, I have done a fabulous job of complementing professionals to stroke egos, kissing enormous asses to get needs met, flexing my muscles when necessary, and begging when it was called for.

I’m a firm believer that you do not need to be a bitch to be an advocate.

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But there is always this too:

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With this teacher, I pushed when I should have pulled, bobbed when I should have weaved, bit when I should have kissed.

There is more.  Of course, there are two sides to every story, you are only reading mine.  The teacher insists this is an ISD and district decision.  And the teacher is correct.  The ISD makes a recommendation to the district of what they feel is best placement for the least restrictive environment for the student.   There are also all the details of this meeting that make it perfectly legal.  Pulling this rug out from under us was done the right way, well, legally anyway.  Yes, we can appeal.  Yes, they are offering us an alternative option.  It is a program she was in before.  She was not successful in that program.   Also, did I mention that it’s a 2 and 1/2 hour bus ride – one way?  We aren’t going to do that to her again.  I’m sparing you every crappy detail.

And let’s not ignore the obvious.  Issy is a child capable of great violence.   Many a school would be unwilling to take her.  Well, except for the public jr high she currently attends (while in treatment).  When I told her current teacher about our local school’s decision, she choked up, offered to call our superintendent, then gave me the phone number of an education attorney.  How awesome is she?!  This is why we will likely keep Issy with her.  So I’ll move to Kalamazoo, three hours away from home, my husband, and my other two children to do what is necessary to meet Issy’s needs.  I wish though, the school could have tried.  Matt and I aren’t unreasonable.  If it wasn’t going to work, we would be the first to pull her out.  *sigh*

So, let me tell you again.  I am not special.  I know this has happened to some of you.  Did it happen in a school setting?  Was there one person who is paid to work with children or families in crisis and worked hard against you because they were mad at you? Or didn’t want your child?  Could this happen with a social worker?  Let’s say you really pissed him/her off.  Could they stop you from getting respite hours?  Or therapy?

I love the saying:

when-you-know-better-you-do-better

For those of you who follow my blog  and are in a position to help others, can you put checks and balances into place so “power plays” will not happen?  It’s a complicated endeavor, for sure.  A power “player” must be in a position to manipulate a situation and people.  Seriously, this is the stuff of a John Grisham novel or JD Robb book (don’t judge me, I love trashy novels).

I wish I was a psychologist or an anthropologist.   I love the study where scientists acquired a jail and had volunteers act as prisoners and others were guards.  They had to end the experiment because of the abuse.  You can read more about it here.    Studies about Stockholm syndrome are also facinating.  How about mob-mentality?  What turns a person from someone unlikely to act in a violent way into someone who blindly follows the crowd?

I bet there is some good information about things like this.  Does the power player perform in predictable ways?  Do they seek power because they somehow feel powerless?  If they work in high stress jobs, is this a sign of burnout?  If they get angry at the parent, yet target the child, should they be held accountable ?  Are they good employees who have just gotten “out of hand”?  I have no idea.   Frankly, having a child with autism seems easier than dealing with the above questions.  But I know some of you are really on top of this sort of thing.  If someone knows of more studies or maybe some books, please pass it on.  Because I know this isn’t the last situation I’ll be in.  I need to handle it differently.

Conversely, are you a power player?  Do you get angry at parents?  Do you take pleasure in petty revenge?  Do you manipulate others (bosses/peers/ colleagues)?  Do you believe that you are awesome at your job?  When you go to trainings or workshops and find yourself always board because you know all of the information?  Is everything about you and not the child or children you serve? If so, you aren’t broken.  It’s just time to evaluate what you’re doing, or how you’re behaving.  When you know better…..

And to add a little more:

If you work with families, please try to minimize the soul shattering disappointments you hand out.  There are ways to say ‘no’ without being inhumane.   Please don’t make your problems mine.  I’m sorry you have 22 kids on your caseload, but that doesn’t mean Issy should be denied consideration because you’re busy.  Please don’t tell me there are 50 other people on a waiting list to use general fund dollars.  Please don’t tell me that when I’ve found the perfect staff that Medicaid will only reimburse $16 but staff charge $18.  At least let me believe you’re trying to figure it out.  It’s my job to try to do my best for my daughter.  It’s your job to be professional and help me do mine (and only one of us is getting paid).

There is so much more to say.  I’m just too tired to write more.

All my love,

Kelli

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She is home.

We picked up Issy from treatment.  It feels wonderful to have her home.  All of us as a family again.  Living and loving under one roof.  So much love….

 

Driving away from the center

Driving away from the center

 

I'm not sure who made this adorable sign.  Please ignore the dog pooping....

I’m not sure who made this adorable sign. Please ignore the dog pooping….

 

Issy wanted a 'team issy' cake like the ones she saw in our pictures.  Molly made her one.  She loves it!

Issy wanted a ‘team issy‘ cake like the ones she saw in our pictures. Molly made her one. She loves it!

 

She found her cat and went straight to her room.  Home at last.....

She found her cat and went straight to her room. Home at last…..

 

Issy seeing her best friends at the football game.  She RAN to them!

Issy seeing her best friends at the football game. She RAN to them!

 

Issy and mom at the football game.

Issy and mom at the football game.

We ran into our friend Kennedy at school!  Love the 'team issy' shirt!!  And Issy is wearing her favorite Papanos pizza shirt.

We ran into our friend Kennedy at school! Love the ‘team issy‘ shirt!! And Issy is wearing her favorite Papanos pizza shirt.

 

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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?

are-you-ready

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!

the-status-woe

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His Continuing Sacrifice

I was 16 when a handsome boy from a military academy asked me on my first date.  He was older, gorgeous, brilliant, and I literally swooned.  He was the brother to my friend Jillena. I was worried my mom wouldn’t let me go.  She did.  Our evening ended with my first kiss.  Chaste and sweet at my front door.  Our lives took us in separate directions.  I knew he served our country and was proud and thankful for it.

This is Nick Avery.

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I’m finding it difficult to sum up 25+ years. But what I want to say is that this is an amazing man, who served our country, and now needs our help. His family has worked with the VA and much like Issy’s story, he is falling through all the cracks.

Jillena has taken over Nick’s care.  She started a blog and a donation page to get him help. Please learn about this man, his service, and his struggle.  —> http://fight4nick.wordpress.com/

Here is the ‘Go Fund Me’ page: —> http://www.gofundme.com/2rlq3s

Please keep Nick, and the entire Avery family in your prayers.

Nic-Avery

Jillena posted this on Facebook today.  I could cry.  Nick is only  47….

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Even a Marine needs a hand.

Thank you for reading.

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A Suggestion for School Safety

Finally a post that’s not autism related!

My husband works for a small school district in northern Michigan.  I’m not exaggerating when I say he does it all.   Principal, Athletic director, Varsity Football Coach, JV Basketball Coach, and custodian.  Ok, he isn’t really a custodian but since there isn’t a daytime custodian he is the one to clean up vomit, handle sewage back ups, major messes, refilling toilet paper.

I’m not going to mention the funding issues for our school.  It goes without saying, right?! (hello Lansing!*waving*)

You might think he looks like this guy…..

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You aren’t far off.

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In addition to my children being in school, my husband is there too.  Literally our entire family can be in one building at any given time (I substitute teach occasionally.  I prefer to be called a “wandering educator” as opposed to a “sub”. But I’m at school a lot).

School safety is something I think about often.

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Just about every day.

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Many times during the day.

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There will be more school shootings.  It’s not a matter of if, but when.  I’m not trying to be a “Debbie Downer” but we all need to understand that.  It can happen anywhere at anytime.

According to my newsfeed on Facebook, the gun debate is alive and well.  I have no reason to believe there will be any resolutions coming about guns in the near future.  Hell, for the far future either.

My husband mentioned to me that there was something out there that would allow school administrators to carry handguns.  Not a bad idea, really.  However, just having a loaded weapon in the school makes me nervous.  What if my husband was clumsy with it?  What if he hurt himself or others?  Or, in an intense situation, what if he had it taken off of him by a bad guy?

Not good.

In a crisis situation, the police would be called.  And no matter how close the precinct, it would take an eternity to get there.  I’ve seen many movies with cops.  They just don’t go running into a crime scene, either.  They slink around corners and cover each other.  Rightly so, but if children are dying, well I know one guy who would run headlong into danger.

Yes, him.

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As special as he is, I know all schools have someone like him.  Who would run into danger first and ask questions later.

So I ponder the best way for an unarmed principal (or any school employee) to protect the children and others in the school.

Now my theory isn’t without its’ flaws.  But I do think it’ll work.

Here it is:

Keep a working chainsaw in the office.

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Seriously, think about it.

There is a bad guy in the hallway moving toward classrooms.  Matt is going to go running down the hall anyway.  Why not fire up a HUGE chainsaw?

I really think it would cause the bad guy to pause for a minute.

We all understand that in “rock, paper, scissors” terms a gun beats a chainsaw.  But in a chaotic situation, who knows!?!

Also, I think the chainsaw would offer a bit of protection for my beloved first husband.  It isn’t quite a bulletproof vest, but it will make it harder to get to some of his vital organs.

Look how it protects his vital organs!

Look how it protects his vital organs!

Does anyone else ever think about this sort of thing?!

Anyone? *crickets chirping*

Now to be practical, the chain saw would have to be fired up weekly and checked regularly for gas.  It would take time to maintain this school protector, but I think it would be worth it.

Don’t laugh! Allow me to take this a step further.

Have two chainsaws in the building.  Because two loud scary machines would freak out anyone.

I just think an intruder or shooter would lose a lot of nerve if not one, but two chainsaw wielding school employees came running at them.

Very Scary

Very Scary

School safety is not a laughing matter.  However, thinking outside of the box can be.  And as I said earlier,  he is going to run into the hall anyway….

Stay vigilant and safe everyone!

Kelli

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Tremendous Triumph in Treatment

Just recently, I made an appointment with the Great Lakes Center for Autism Treatment and Research to get an update on Issy’s treatment and progress.  Remember, I talk to Issy everyday and I often talk to the workers, and they are wonderful at saying, “Issy’s having a great day!”  I know they have been keeping lots of data and I wanted to see how she was progressing.  Really see.  With numbers.

I had a meeting and was given this chart.  Personally speaking, I love charts and graphs.  I love the visual representation of data.  However, I recognize that for some of you, this will make your eyes glaze over, so let me break it down.

the-status-woe,chart

The first week that Issy was in the treatment facility, she had somewhere around 650 instances of aggression.

That’s about 93 instances a day

Or about six per waking hour

Or averaging about one every ten minutes

I had never tracked her data at home like this.  We kept an “average number of hits per month”, but when she was home it felt like she was hitting ALL.THE. TIME.  The numbers reported the first week of Issy’s treatment seem very similar to what we were living with at home.  Every day.

The behavior plan was implemented the 3rd week she was at GLCATR.

Fast forward.  During week 11 (two weeks ago), she had less than 25 instances of aggression for the week.

LESS THAN 25!

FROM 650 TO 25!

So if we were to calculate……

She had (math%) reduction in problem behaviors!

The graph shows an overall reduction in her problem behaviors.  She still has a lot of work to do, but we’re on the right track.  Incredible.

Issy,miracle,the-status-woe

At the meeting, we talked about Issy’s goal date to come home as being around November 1.  We can actually consider moving that back a month if her data continues to show improvement.  It could even mean she may be home in time to start school in the fall!

It’s working.

We are all investing a lot of energy into her through prayers, letters, love, donations, and support.  It’s all making a difference.  We all own a piece of her success.

Team Issy is a winning team.

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We always will be!

But please don’t forget about the others.

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My friend Lisa is in the thick of it.  I’m so worried about her.  Her blog—> Here 

And there are so many more.  Hopefully Issy’s success can be used as evidence that behavioral therapy works.  Maybe insurance companies will see the value of providing intensive behavioral therapy for kids with problem or extreme behaviors.

Maybe politicians can look at our case and come up with a treatment pipeline for families who are living like we have been (hello Lansing*waving*).

If you are interested in representing “Team Issy” , you can find t-shirts here.

Team Issy shirt

Team Issy shirt

My friend and bff Keri is making tutus (she can make any size and any color). With Proceeds going to Issy’s treatment!

Any coler(s) or size!

Any coler(s) or size!

Issy’s friends Taylor, Lorynn, and Morgan, are making these woven bracelets (super cute!!).  Just email with your wrist size and style you prefer.  They are $8 with the proceeds going to Issy’s treatment!  Email to: cebanktson@hotmail.com

bracelet,the-status-woe,team-issy

Bff Mindi Marshall is having a Stella and Dot trunk show with the proceeds going to Issy’s treatment.  Have you seen the really cute autism awareness bracelet?  The Show is open until the end of  April 2013! Check it out here.

If you would just like to make a donation you can check out our Go Fund Me page here:

Thanks for reading and caring about my girl!

mom and Issy

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Acknowledged

This came in the mail to me last week with a check for $240.00.  I’m having a hard time trying to describe how I feel.  Honored, blessed, grateful.  But mainly, acknowledged.

Thank you for recognizing my fight.

Thank you for supporting me.

Thank you for mitigating the wrongs.

Thank you for the inspiration.

RAC card

 

RAC card inside

 

rac letter

 

Thank you,

Kelli

Kelli-Stapleton,the-status-woe

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Neurology Appointment Update

A quick update regarding my previous post.

 

You may remember the 3rd party expert (who holds my life and Issy’s future in his hands) requested a neurological evaluation for Issy.

neurological-exam

 

She had one 3 years ago at the University of Michigan.

 

Still, to be compliant, we tried to get her an appointment.

 

No luck.

 

Helen DeVos Children’s Hopsital, our state’s next largest medical center, refused to see Issy as well.  What they said was—> There was no medical reason to see her and they don’t believe anything has changed since her appointment at UofM.

 

Bonus: They agreed to write a letter to the 3rd party expert!

 

So hopefully the 3rd party has enough information to decide if Issy’s behavioral treatment should be covered by MESSA.

 

We’ve been told there should have a decision by 19th of April.

 

hope,Issy-stapleton,Kelli-stapleton

 

 

 

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Issy funding update

Issy is continuing to do well in treatment.  It’s not a sprint, It’s a marathon.  It isn’t easy for her, and it isn’t easy for her dad and I.

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I wrote in a previous post about the company MESSA.   They are currently funding Issy’s stay at the Great Lakes Center for Autism Treatment and Research.   If you remember, our CMH would only pay for 30 days.  MESSA came in and gave us a nurse advocate and a contact person at the company.

Our initial contact person with the company took our case to the top where a decision was made to “probably not” fund her but they wanted more information.  She was scheduled to come home.  Rather than allowing her to be released then possibly re-admitted, MESSA offered to pay for her care while they gathered more information.  At $765/a day we are beyond grateful.

MESSA agreed to pay for Issy to stay from March 12 until March 22.  During that time, I worked with my nurse case manager and gathered EVERY medical record and treatment report we had.  EVERY. SINGLE. ONE.  Seriously, can you imagine?

Woman Holding Large Stack of Paperwork

On March 22, the decision was made to hire a third party expert (from most likely out-of-state) and have him (or her) look at all of the information and make a decision.  So they extended Issy’s stay until April 5.

After receiving all of the medical records, the third party expert requested a neurological evaluation.  This is where things begin to take a turn.

A few years ago, we had a neurological evaluation done at the University of Michigan Motts Children’s Hospital.  The expert has this in his pile of information.  Why would they need another?

huh-face

We decided we didn’t have much of a say, so we agreed to have an appointment be set up for Issy.  It was with a neurologist who has a local practice in the Kalamazoo area.  Matt and I, our nurse case manager, and staff from the center all planned on going to this appointment.  Just days before the appointment, however, the neurologist backed out, explaining that Issy’s case was too complicated.

There are two things here that bother me…….questions

*Why would a doctor back out of a basic evaluation with a new patient?  As far as I know, no one talked to him.  Did he hear about Issy from all of the newscasts and newspaper stories?  Did the expert contact him?  Did MESSA?

*Why would an evaluation from a doctor in Kalamazoo trump an evaluation done at the University of Michigan?

I asked my nurse case manager if we could just reschedule another evaluation at University of Michigan.  It’s about two hours away from where Issy is in treatment but we’ve never EVER held back from seeing experts because of the drive. (During early intervention, Issy and I drove six hours round trip for a two hour appointment EVERY Friday with our behaviorist.  And I was happy to do it! I knew how lucky I was to have such an amazing program in place.)  This is when the nurse case manager said that the only problem with that is it would be inconvenient for us to go back if they wanted to schedule an MRI.

*Insert the sound of screeching breaks here*

surprise-face-march

 

For Issy to have a test like an MRI done, she would have to be sedated.  And I’m not talking about a Xanex here.  She would need to be asleep.  Like, sleeping beauty sleeping.  So this means an anesthesiologist, needles (she is traumatized by needles).  Remember the whack job that said Issy caused a miscarriage? The subsequent hospitalization was at a place not equipped to handle children with autism.  They injected her with sedatives constantly.  She is still traumatized by that.  We all are.  To do the MRI, it would mean needles, sedatives, and holding her down.

Not an exaggeration.

Not an exaggeration.

I asked both my nurse case manager and my contact at MESSA about this expert.  I felt like, if he (or she) is requesting this information, I would like to know what his credentials are.  Is he a doctor? Autism expert? Lawyer? Or Accountant?  I was told that I was not allowed to know that information.

Not allowed to know that information.

I told my nurse case manager and my contact at MESSA that I wasn’t comfortable having unnecessary medical tests done on my daughter for “informational purposes only”.

My nurse case manager and my contact at MESSA told me that I could always refuse medical testing.

Sure.

Then Issy’s funding goes away, right?  It goes away because the expert doesn’t have enough information or maybe because I’m not being compliant.

I was frustrated and upset and told that to both my nurse case manager and my contact at MESSA.  They both said I wasn’t grateful enough for what MESSA was doing for me and that I needed to see a therapist.

I need to see a therapist. *sigh*  Do you suppose being an advocate for your child always results in personal attacks?  Based on my experience, it does.

Take your best shot. Go ahead. I made it easy for you.

Take your best shot. Go ahead. I made it easy for you.

Issy’s treatment is being paid for by MESSA until April 19.  We are grateful.

I’m also keenly aware that treatment can be pulled at any minute.  MESSA can simply say, “our third party expert doesn’t feel this treatment is necessary or something that should be covered by MESSA”.  And what can I say to that?

Nothing.

My life is at stake along with her entire future.  This family is being held hostage by bureaucracy and red tape.

tied up

So I continue to try to get national attention for Issy.  I still feel (perhaps foolishly) that if a nation is watching, she will not be denied treatment.  I also feel that national attention will bring help for all of the families just like ours.

What do you think?  Am I being ungrateful?  Looking a gift horse in the mouth? Being unnecessarily oppositional?  Or am I being a protective mom?  Guarding against unnecessary medical testing and unnecessary interruptions in treatment?

Well, I’m certainly going to continue to fundraise.  Now more than ever.  So many of you have given.  And for that we are so very grateful.  We still need in excess of $130,815.00 to get her funded in treatment until she “graduates” on November 1.

donate for Issy

Please check out our Go fund me page here:  http://www.gofundme.com/2fppdc

If MESSA pulls the plug on funding, we have enough from private donations to have her stay until May 13.

I’m trying not to panic.

Also, I sincerely hope I am the LAST MOTHER THAT HAS TO GO THROUGH THIS.  No mother should be told to go to therapy for a perfectly normal response to an abnormal situation.

My go to phrase is  “parents should be able to find help AND access it.”

No personal attacks

No jumping through excessive hoops

Not strung along

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Here is a list of the treatment extensions MESSA has given us.  Each extension is a nail-biter.  Not knowing if there will be an answer.  Wondering if Issy has worked hard enough, if she’s shown progress, if we’ve done enough to seem worthy.   And each time I let myself hope that the call will say, “we have decided to fund the balance of Issy’s treatment.”   It hasn’t.  MESSA has put me in a very unique hope/Hell place.  Once again, I hope I’m the last mother to have to be here.

From Feb 12-26

From Feb 26-Mar 8

From March 8-Mar 22

From Mar 22-April 6

From April 6-19

5 extensions.  Yay and ouch.

Thanks for reading.

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