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.

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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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Retrain The Mom Brain

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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

kelli-stapleton,the-status-woe,blog-photo,autism

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Angsty is not professional or helpful. I’m looking at you Recipient Rights Office in Lansing, MI *waving*

If you read my last blog post about my friend Lisa, you know that we asked anyone who read her story to submit a recipient rights violation and send it (old fashioned snail mail)  to the recipient’s rights office at the main building in Lansing.

Many people sent in letters.  And I’m happy to tell you that Preston is in treatment.

PRESTON IS IN TREATMENT!!!!

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I’m not exactly sure how Preston got into treatment.  Letters, prayers, and I suspect there were many people working behind the scenes to move mountains of paperwork for this child.  They did it.  A family who was in severe crisis is now on their way to an improved life and getting Preston the help he deserves.  I don’t know who you are but THANK YOU!  You have just given this family a miracle.

Similarly, there were people working behind the scenes to get Issy help.  Moving mountains of paperwork, phone calls, jumping through hoops.  We are so very thankful.

It seems to me that currently, to get a child who has extreme behaviors help, you almost need special treatment.  You have to get the attention of important people.  I hope that changes.  I hope there becomes a streamlined process for families who have suffered at this level (yes, living for years in a life threatening situation is enough suffering) so that the attitude is helpful and sincere.  Please say words like this to those families:

How can I help you Mrs. Stapleton?

I don’t know how you have done this for so long!

Here is our plan for your child.  What do you think?

Here is a program for you and the siblings, run by excellent professionals who have experience with what you have gone through.

Please call us with any concerns.  We want to help you.  We want to improve our services for other families.  So really, any concerns you have, just call, email or text me. 

Ok….I know that’s a dream but I believe it can happen.  We live in a great state!  The mitten state!  We are surrounded by HUGE freshwater lakes.  Did God do that with the other states?  Noooooooooooo!  Clearly we are favored here!

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Which brings me to a recent EPIC disappointment.

Just the other day I got this comment on my blog about Lisa  from Beverly Sobolewski 

She works at the recipient rights office in Lansing.  I’m hoping that she isn’t the main director.  If she is, my disappointment just became exponentially worse because this attitude will have a trickle down effect with her underlings (I’ve seen it before).

This is the comment:  photo (3)

It just seems angstyya know?!

My reaction:

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Well, I can’t speak for the entire state government, but this is the attitude that exemplifies what is wrong with our state system in dealing with extremely disabled children.   And not unlike what I’ve gotten from nearly everyone who is in a position to help us and chose to say words that ultimately do nothing to help more the situation forward.

Here is the comment I wish she had written.

Dear Kelli,  Thank you so much for bringing this case to our attention.  It is heartwarming to see so many good people support Lisa and Preston.  I wish more families had this wonderful of a support system!  We have received 50 letters from MI, 20 from other states and 2 from
Canada!

Now that we know about this situation we will open an investigation.  It will involve talking to her, her local CMH, and others so we have a complete understanding of her situation.  We understand that this is an emergent situation so we are pulling all of our resources to help this family.

Our office is here to help families like Lisa.  Please don’t hesitate to file a recipients rights complaint in the future anytime you feel a consumer is being mistreated.  It is our job to help.

Best wishes to Lisa, Preston, you and Issy!

Sincerely,

Beverly

I know, I know.  This isn’t realistic.  Not yet.  But someday the attitude in our great state will be one that is supportive and helpful.

YOU MAY SAY I’M A DREAMER

but I’m not the only one

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Thank you for reading,

Kelli

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Mail a letter, save a family. Get some karma for yourself here!

Please help my friend Lisa and her son Preston.

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Lisa is a widowed mother of one boy, Preston.  He is severely autistic and horrifically aggressive.  He decimates property, injures his caretakers, and hurts himself.  Lisa has been asking for help but not getting it (sound familiar).

There are some issues in the state of MI regarding children like Preston and my daughter Issy.  No one wants to be responsible to pay for the treatment they so desperately need.  It’s complicated.  Lisa is exactly where I was six months ago when I had lost all hope for my future and Issy’s.

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Only Lisa’s situation is much worse.  There is no insurance company that is going to come out of the woodwork for her and play the fairy godmother.

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It is like watching a train wreck.

I now know exactly how my friends and family felt when it was me.  Helpless, horrified, mystified that there REALLY isn’t any help.

Well, WE CAN HELP LISA!!!!!!  It took some people smarter than me to figure it out (I’m looking at you Nicole and Suze) but here is the information we learned:

Lisa is getting services through her community mental health agency (but clearly, not enough).  When you have a problem with your services you file something called a “recipients’ rights violation” report.

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Well…..this is where it gets good:

ANYONE CAN FILL OUT A RECIEPIENTS RIGHTS VIOLATION REPORT ON BEHALF OF ANOTHER PERSON!

We can ALL file a report to the recipient’s right officer at the state capital (in regards to Lisa and Preston).  All of the reports MUST be followed up on (as required by law).

This will help Lisa in the following ways:

*It will let her complaints be known at the state capital and prevent her local community mental health agency from ignoring her.

*It will let important people know that MANY of us are watching this case and expect intervention.  And if something terrible happens to Lisa before she gets help, well, there is a paper trail from all of us who love, worry, care, or can relate to her and her needs.

*Not only are we helping Lisa, we are helping the state of MI recognize children with severe aggression and their desperate need for help.  Michigan is an amazing state.  Once they know better, they will do better for our kids.

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All you need to do is print out a copy of the recipients rights complaint.  Fill out the 5 blank spaces that are pointed to in red (I filled in the rest for you, to make it easy).  Then mail the complaint to the capital.  Emailing is not an option (I totally wish it was).

Here is what you do:

*Click the link

*Print and fill out the 5 spaces on the form

* Mail to:     MDCH – Office of Recipient Rights

                          320 South Walnut Street

                        Lewis Cass Building

                        Lansing, Michigan 48933

Here I provided these examples.  The form is already filled out except for the information we need you to provide.

PicMonkeeey Collage

PicMonkkkey Collage

Here are the downloadable forms:

You can click on this version:

Microsoft Word version here: Preston RR form 1

or this one.  They are the same:

PDF version here: Preston RR form 1

Want to help more?

Here is a fundraiser—> http://www.youcaring.com/medical-fundraiser/help-lisa-preston-put-their-life-together-piece-by-piece-/47136

If you would like to send help in the form of gas cards, target cards, walmart cards, (or anything else you can think of) you can send them directly to Lisa here:

Lisa Sain

9422 Tiger Run Trail

Davison, Mi 48423

*When I asked about putting her address ‘out there’ in public Lisa laughed.  She said if anyone wanted to come to her house for unkind reasons, they would take one look at her life and run in the other direction.  I just love her!

Thank you everyone!

Here is mine!

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Please take a picture of your envelope and post it here on my Facebook blog page here—> Kelli Stapleton-The Status Woe   I hope there are thousands!

*fingerts crossed* for you Lisa!!

Thanks for reading everyone!

Kelli

UPDATE!!!!! 

Preston went into treatment today! July 29, 2013.  Welcome to your miracle Lisa and Preston!  

Please check out Lisa’s blog for further updates!!  

Kelli-Stapleton,the-status-woe

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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!

kelli-stapleton,the-status-woe,blog-photo,autism

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Fully funded and it feels so good. Fully funded ’cause you understood……

We. Did. It.

funding

Messa has been Issy’s fairy godmother.  In addition to helping Issy they have laid down the very first brick in a path that will get residential treatment for extreme behaviors covered by insurance and Medicaid in the future.  There will be many, many (many, many,many,many,many, stoopid amounts of ) bricks on this path; but this is where it starts.  Right here.

Yes, they just did that.

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Here is their facebook page.  Please, I beg you, like their page and tell them thank you for supporting Issy, saving our entire family, and breaking new ground in autism treatment.  https://www.facebook.com/MESSAOnline?ref=br_tf 

With the help of Messa and donations, we feel confident that Issy’s treatment will be able to continue through to her discharge date of  September 2nd, 2013.

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We are finished fundraising.

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Any additional funds that come in from t-shirt sales or donations will go toward all of the expenses related to Issy’s care that aren’t covered by insurance, Messa, or Community mental health.

Appropriate gif for autism related expenses not covered by insurance….

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Issy update.

Issy is doing so well in therapy.  Everyone at the facility is working hard to help her.  She has prayers, letters, and good energy coming from all over the world.  She will be a success story for the facility (and the first to go through fully funded), for us, and all the families who are trying to get treatment at Great Lakes or in similar placements.

kid success

In fact, Issy’s treatment is going so well we were able to move her release date up two months, from November 1 to September 2 (In time to start school on the 3rd!).

We are working on thank you notes but please understand if we’ve missed you.  So many donations have come from many different places.  Looking back, I should have set up a spreadsheet.  But I seriously had no idea so many people would want to help us.  We are so very fortunate.

Thank you everyone.  At this moment, I have so much happiness and hope.   Please stay tuned because I plan to continue blogging about her progress (I just had my FIRST training session to transition home. Wow…wait until you hear about that!).

Three girlfriends in white T-shorts jump having waved hands

Thank you for reading,praying,donating,loving,hoping,and wishing!  There is a lexical gap for a word to describe the amount of gratitude we feel.

Kelli-Stapleton,the-status-woe

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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!

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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