The Status Woe

Rising above mediocrity one mishap at a time

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

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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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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!

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

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

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

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

The video below has no sound.  Thankfully!

Poor guy…

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

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

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

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

Thanks for reading!

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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.

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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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