The Status Woe

Rising above mediocrity one mishap at a time

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

We. Did. It.

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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.

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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!).

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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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Team Issy Shirts

Issy’s treatment is going really well.  She is responding and the data shows that her instances of aggression AND the intensity are going down!  Yay!!  We still do not have treatment fully funded.  The insurance company (MESSA- not really an insurance company, but close) wants more information.  They will pay for Issy’s treatment until March 22nd.  With donations we can cover Issy’s therapy until the beginning of May.

A $3 donation = 6 minutes of therapy

A $10 Shirt = (math) minutes of therapy.  She is worth it!  I promise you!

The Team Issy Shirts

These are 100% pre shrunk short sleeve cotton shirts

Black with Hot pink lettering.

Front: Team Issy and a puzzle piece ribbon logo

Back: #autismawareness Helping advocate for all of those who have been “Issied” by the system

100% of the profits of these shirt sales goes to Issy’s treatment.  That’s because these amazing companies sponsored the shirts!  Please go to their Facebook pages and websites and show them some love  ♥

Britten Banners

http://www.facebook.com/BrittenBanners?ref=ts

http://www.brittenbanners.com/

In Home Health Care Services

http://www.facebook.com/pages/In-Home-Health-Care-Services-Inc/162179727168543

http://www.facebook.com/pages/In-Home-Health-Care-Services-Inc/162179727168543

Graceland Fruit

http://www.facebook.com/gracelandfruit?sk=wall&filter=2

http://www.gracelandfruit.com/

Curtis Insurance Agency

http://www.frankfort-insurance.com/

Crystal Lake Glass.

Corner Drug and Corner Toy Store

http://www.thecornertoystore.com/

http://www.facebook.com/pages/The-Corner-Toy-Store/134864012488

Honor, Frankfort, and Onekama Building Supply

http://www.honorbldgsupply.com/

I’m on the left wearing the team issy shirt.  I’m wearing a size adult medium (and a black shirt under because it’s cold here).  I like my shirts roomy and this was perfect (usually I prefer large but the large was a little too big). Hope that helps…

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Team Issy shirts are no longer available.  Thank you for your support!

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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:

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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!) ?

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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

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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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Finding Help is Different than Getting Help.

So my daughter has agression issues.  You can read this post here for some insight.

Or listen to this show on the Coffee Klatch here.

 

I’m so grateful to have friends and family who are always on the lookout for autism related news for me.  Recently, a friend sent me an article about a place that opened in Kalamazoo,MI (Yes there really is a Kalamazoo!).  

So I called The Great Lakes Center for Autism Treatment and Research

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This facility was built SPECIFICALLY for autistic children with “problem” behaviors like mine.  I CAN NOT EVEN express the relief I felt in speaking with someone who understood what was happening to me, our family, and specifically our daughter.

Did I mention that GLCATR is ONLY 3 hours from home?!?!  Honestly, it’s times like this that I believe God makes miracles.

I cautiously asked, “How long is the waiting list to get in?”  The answer, “There is only one child here now.  We have open beds, and not only that, but your child will never receive better care from a full staff!

I drove down to Kalamazoo THE NEXT DAY!

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The facility was amazing.  Brand new, cutting edge, full of bright and shining staff.  I impressed and humbled.  

Help at last!

They wanted to meet Issy so back to Kalamazoo we went! 

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My husband got to see the facility and we had more time with one of the directors.  They separated us from Issy so they could get to know her. 

Predictably, she showed some of her agressive behavior.

So we left there knowing that GLCATR can and would help her! 

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That feeling.  You know, when you’ve accomplished something so hard.  Crossing a finish line, getting a diploma, summiting a mountain.  That feeling.

Too good to be true right?

Yes

I’m learning that GLCATR is NOT covered by insurance.

Nor is my CMH required to pay for treatment.

 

It’s been 2 months since our visit to Kalamazoo.  Her agression continues to escalate.  10 days ago she beat me unconscious. My younger daughter used her phone to call for help.  I was hospitalized as a level 2 trauma.

We notified CMH of this new incident.  And still, they won’t pay for treatment.

We have met/consulted with

1.) The state psychologist Price Pullins

2.) Child Psychiatrist Shelia Marcus  and Behavior specialist Judith A. Coucouvanis

3.) High level Department of Children with Developmental Disabilities representative Lori Irish

 

They each know our story.  The horrific nature of Issy’s agression.  Yet, there is no treatment coming.

 

An interesting fact.  If Issy were on medicaid, she would have treatment. 

So if I divorce Matt, she may get treatment.

If Matt lost his job, she would get treatment.

If Matt died, she would get treatment.

If I die, nothing changes, she still won’t qualify for treatment.

If we relinquish parental rights, she would get treatment.

 

I honestly can’t even wrap my head around the fact that in the 21st century this little girl can’t get help.

 

We can’t give up on her.  We just can’t.  She is our little girl…

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What are you doing with the second half of your life? AKA Your Second life?

I ordinarily wrote this for the Museum of Motherhood‘s MamaBlogger365 project

I know I’m not the only one who likes to stroll through a cemetery on a nice day. There is one by my house that is on rolling hills and partially in the woods. The monuments are old, and the buildings have iron doors with big hinges. It feels very historical and lovely. Let me pause to just tell you that I am in NO way “sensitive” to spirits. I never have and DO NOT see dead people. For me, it’s just a lovely place to ponder those who have passed.

Photo Credit

On one of the first warm days of spring last year, I was walking through the cemetery with my friend Tiffany. She was pointing out all of the people who had died in their thirties and forties. I suppose that wasn’t entirely uncommon at the turn of the century (last century, that is).

She then mentioned that she thinks of her age (30+) as her second life because so many of these people only had one life and it ended early.

WOW!

She is exactly right. Historically it’s been rare for someone to live to be 100 years old. Just before 1900, the life expectancy was just under forty for both men and women.

Okay, so I’m living MY second life.

I’m living a life that many of those good people in the cemetery may have wished they had the opportunity to live. I was literally awake an entire night pondering this. Not just for me, but for all of us. Those who are my age-ish are all working on their second lives. So what does that mean? Here are some of my thoughts…

  • You may be an entirely different person in your second life than you were in your first life.
  • You’re first life relationships may be incompatible with your second life.
  • Your second life may bring a career change.
  • Your second life may bring a change in your marriage status.
  • Your second life may be defined by new goals.
  • You may want to start a new family.
  • You may want to take on new educational endeavors.
  • You may want to sell all of your earthly possessions and sail the world.
  • Second life is an opportunity to be more altruistic, generous, and awesome.
  • Your second life is a gift.

So let me talk about parenting for a minute. For the most part, parenting is a first-life endeavor. It also is a brief one. Brief in the terms that it’s only eighteen years-ish of real ‘hands-on’ work. I wish the older, wiser, second-life me could go back and help first-life me but in all honesty, first-life me did a pretty good job.

I’ve learned a few parenting lessons along the way. My daughter is disabled by autism. I will continue to care for her through my second life but maybe I can offer some support to the first-life mothers who are struggling with autism.

Second-life me is going to be an awesome grandparent. With expectations of good health, I hope to help my children with their children. And I should! “Parent” is one title that transfers over to second life.

I hope this resonates with some of you. If it does, please comment and let me know your thoughts. Best Wishes!

Kelli Stapleton

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Domestic Abuse and Why I Stay With My Abuser

I had written this in April 2011 in a Facebook note.  The situation remains unchanged.

Domestic abuse and why I chose to live with my abuser….

I’m smart enough to know that I’m a victim of domestic abuse. I’m also smart enough to know that I can leave at any moment. So why do I stay?

Love.

Isn’t that always the answer?

I’ve been bruised from head to toe, knocked unconscious, suffered injuries that were visible and others that weren’t. I’ve had to make decisions about going out in public because of how my face looked, and what to wear to best cover my bruises and contusions. I’ve had a bank close my account because my signature never matched my signature card…but it doesn’t if your fingers are broken, strained, and sprained.

I don’t like to be hit. It hurts me physically, and it hurts my feelings. I know my abuser loves me. I also know my abuser will kill me. But I still can’t leave. So now what?

I live.

I always wanted to write a book, so I did. I’m learning to play the guitar. I would like to write songs too, so I will. There isn’t any reason to put it off, is there?

I hope the hitting will stop. I hope I don’t get killed in front of my children Q and Ainsley.

And If I am killed, I hope I don’t get revived by some well-meaning EMT or ER doctor. I would hate to have to die like that TWICE! I wear a DNR (do not resuscitate) bracelet, and have paperwork filed at the hospital. But this remains a huge concern of mine.

There was a day recently when my abuser was really out of control. The blows were coming, and coming, and coming  I was seeing stars and unfortunately lost my footing. Now I was on the floor prone and in real trouble. I reached in my pocket for my phone and was able to dial 911 before the phone was thrown out of my hands. When the officer arrived, I was so relieved! I had survived it!! It was (thankgodinheaven) over. Just like that, calm replaced the savage beast. The police officer looked around the room and became hostile to me, “Why did you call the police?!” I looked at her with my eye, the one that wasn’t swollen shut, and apologized for calling her. My mistake. Clearly.

So why do I stay?

Because my abuser is my autistic daughter. She is now much larger than me and has no understanding of the damage she does.  There doesn’t seem to be a way to stop her. Nor is there anyone who can help us. We’ve tried.

 

 

 12-17-12 Update here—-> https://thestatuswoe.wordpress.com/2012/12/17/finding-help-is-different-than-getting-help/

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Going to the Deadbangers Ball

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I have yet to meet anyone who is as excited about dying as I am.

Let me just say that I am NOT suicidal.  That is something completely different, and I don’t want to freak anyone out.

Back to the original point—> I’m not afraid to die.  Not one bit.  I’m actually excited about it happening.  Preferably before I lose all of my teeth, my bodily functions (exemption for when I sneeze), my good nature, and skin elasticity.

Definition—>  Death: the act of dying; the end of life; the total and permanent cessation of all the vital functions of an organism.

Also referred to as:

  • To breathe one’s last
  • Assume room temperature
  • To count worms
  • Wearing a pine overcoat
  • Negative patient care outcome
  • Deadbangers Ball
  • Moved into upper management
  • Going organic
  • Rottingham
  • Eating a dirt sandwich
  • Pay one’s debt to nature
  • Dust to dust reunion
  • Metabolically Challanged

I am a proud Catholic that sporadically attends a Lutheran Church.  I don’t mean to brag or anything, but I am one of the most prolific sinners I know.  Surprisingly, I believe that I will go to Heaven.  I believe in Heaven’s existence so much that I’ve already started making plans for when I’m there!  Seriously, I never get to talk to my friend Marni, so I shrug it off and remind myself that I will have lots of time when we’re in Heaven together.  I know I can’t be the only one who does this?!

Have you seen any of those shows about people who have near death experiences?

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If I am ever in some sort of horrific accident, I’m running (not walking) to “The Light”.  If God says, “It’s not your time Kelli”. I see myself clinging to his robes and R-E-F-U-S-I-N-G to go back.

Now here comes a little irony.  I have a daughter significantly disabled with autism (but higher functioning than Britney Spears).  I CAN NOT DIE!!!

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Thank you Four Sea Stars  for the image!  Blog=awesome= here—-> (http://four-sea-stars.blogspot.com/)

As the poster says, I have to make this child ready for the world.  But also, I have to make sure she is  SAFE when I’m gone and living on the other side in the pearly gated community.  She needs to be safe from abuse, exploitation, neglect, theft, and so on.  Remind me to tell you about a worker we had that faked a pregnancy and then accused my daughter of causing her miscarriage.  My little girl was 11 at the time. *sigh*

What would keep her safe (and not burden her brother or sister too much)?

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Money.

How much money will it take to make sure that she has a home, staff, cameras installed EVERYWHERE, comforts, and safety?  I did some quick mental math and decided that it should be AT LEAST 5 million dollars.

$5,000,000.00

How much have I got saved so far?  Well….I don’t even have a savings account yet…..

I’m a very hard worker.  I have a successful talk show, website, book.  I’m a public speaker and events host.  But I need to ramp it up a notch or two if I’m going to make it to the 5 million mark.

But let me pause here to just say, I would feel MUCH (MUCH!!) better if it were 5 babillion.  That’s right FIVE BA-BILLION DOLLARS! People can be/and are horrible.  I want this daughter of mine SAFE and HAPPY.  Also, I want those that care for her to be HAPPY.  Really happy!  I want them to LOVE their job!

Things I’m considering to do to earn 5 babillion dollars:

***Internet porn- but with the bloom of youth gone, and 20 pounds overweight, well…. no one wants to see that *sob* (ok, my husband would, but he isn’t about to pay anything… cheap ass)

***Great Lakes Pirate- This honestly excites me more than a little bit.  I think I could come up with a FABULOUS outfit, great make up.  With the help of youtube, I could watch HOURS of Johnny Depp and work on my accent. *arrrg*.  I need to find a boat, learn to navigate, and somehow board large lake-going vessels and rob from the rich to give to me.  Clearly, this isn’t something that I can start tomorrow.  Oh, and I only want to do this for June, July, and August.

***Make a sexy calender- see above for internet porn

***Start a ponzi scheme-I can’t even convince my mother that the “Lindsay Lohan” self-tanner orange look is out.  I’m not entirely convinced I could get people to actually give me money.

***Reality show- Dear God in Heaven please let TLC see this.  If effing Honey Boo Boo can get a show, surely I could!?  My exploitation of this family would know no bounds!  Yes! Yes! Yes! (pssst TLC email me maybe?:thestatuswoe@gmail.com)

So the irony is….

I want to die.

I’ll never be able to earn enough to die.

When I do die, I’ll be the world-record holder for oldest living person. I will have  lost my teeth, control of my bodily functions, my good humor, and skin elasticity.  I just KNOW it….

Care to bet 5 babillion dollars?

*lip kisses*,

Kelli

Photo credit=Rick Steive

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