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!

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…

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!

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

We. Did. It.

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.

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.

We are finished fundraising.

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….

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.

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!).

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.

Inclusion: Doing It Right.

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

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:

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.

Here is the important part.

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 thing.  They 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 6^th 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!

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 6^th 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, 5^th graders would ask the 6^th 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 6^th 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.

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!

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!

Good luck and thanks for reading!

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.

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.

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

Even a Marine needs a hand.

Thank you for reading.

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…..

You aren’t far off.

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.

Just about every day.

Many times during the day.

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.

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.

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!

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

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

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 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 3^rd 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.

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.

We always will be!

But please don’t forget about the others.

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

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!

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

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!

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.

 

 

 

Thank you,

Kelli

Autism’s hard to love club

 

Well, this isn’t the first time I’ve found myself on the wrong side of popular.  I have a daughter firmly planted in autism’s “hard to love club”.

She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples.  And her behaviors could be passed off as “age appropriate”.

She is a teenager now.

She is overweight.  It isn’t her fault; we had her on medications that caused her to gain weight.  A lot of weight.   But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.

She could care less about hygiene.   It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor.   Of course, her dad and I do what we can, but we aren’t with her every minute.  At school, she may get food on her face.  Sometimes it gets wiped off, sometimes not.

Teachers aren’t exactly begging to have your child in their classrooms.  People aren’t knocking at your door asking if they can “babysit” your child.  Doctors reject you, clubs reject you, and summer programs reject you.  Anyplace where rejection can happen, it’s going to happen to your child.

She is loud and she is scary.  Imagine the worst tantrum you’ve ever seen from a toddler.  Now picture that with a teenager the size of an adult, with an adrenaline infusion like those of a person lifting a car off of a loved one.   That’s what it looks like for us.  Everyday.

Every. Single. Day.

People in the autism community understand and embrace the “hard to love club”, right?

Nope.  They can’t.

Autism organizations and big names can’t risk talking about autism and aggression/violence in the same sentence.

You see, there has been some bad violence around the country lately.  Almost every time, some newscaster throws around the “autism” or “Asperger’s” label.   So good people are working very hard to clear up that little public relations snafu.

But what if you have a child who is capable of great violence and they happen to be autistic?

Who can champion the cause for the “hard to love club”?  None of these kids are “cured” of anything.. so no book deals with fairy tale endings.  No team managers getting into games here.  No sudden youtube fame.  Many in this club can’t even speak.  There isn’t going to be profound poetry or music coming from anyone in this group.  Well, not without a lot of treatment and help.  Does anyone care about potential except the parents?  And we all know parents are less then nothing when you deal with professionals, insurances, schools, and politicians.  Silly parents can’t fund treatment and help themselves.

And let me just tell you….young adults in behavior programs at the universities aren’t going to school to work with this club.

This is what behavior students dream of doing.

Would some gorgeous Hollywood actress make a commercial in support of the “hard to love club’?

And would she be able to stand up to the criticism that would come from the “easy to love club”?

Many people have told me to shut the F*** up.  Not to talk about aggression and autism.  That I’m not helping “the cause”.  That I’m being selfish.

If you’re in the “hard to love club”, you aren’t alone.  We don’t have much, but we have each other.  Our club will grow.  Problem behaviors are a part of autism and if autism is on the rise, so are behaviors.

We can’t really have conversations with each other.  You know how it is.  Phones get ripped out of your hands, your ears ring from taking blows to the head.  But just know that someone understands.

So here I am sitting on the wrong side of popular.  Again.  But I’m happy you’re here too. We have each other. We aren’t alone.

Your bff!

A much loved child

Neurology Appointment Update

A quick update regarding my previous post.

 

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

 

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 3^rd party expert!

 

So hopefully the 3^rd 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 19^th of April.

 

 

 

 

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.

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?

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?

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…….

*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*

 

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.

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.

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.

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.

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.

http://www.deviantart.com/morelikethis/341936565

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

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.