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:
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:
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!
Now… let me talk about my daughter!!!!
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!) ?
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
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.
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:
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
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:
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
Your daughter’s story reminds me of the story of Helen Keller. Our thoughts are with you as you endeavor to bring peace to your little girl and your family. Stay strong!
Love from frigid Alaska (yes, your story has reached us here via Facebook).
Besides the fact that I love and admire you, have I ever told you how much I love how you write? (okay, am seriously jealous about how you write?) You have an amazing way of telling a story…of getting information out in a way that makes people keep wanting to read…a way that makes people feel and see what you’re saying.
I’m proud of you and excited for you and most of all, I’m hopeful. I’m hopeful that people are listening and learning, that help will come, that Issy will be able to come home AFTER they feel she has gotten the full benefit of their treatment, and finally, hopeful that you NEVER get hit again. Big hugs and prayers from S. Indiana!
Prayers and continued well wishes from PA!!!! I cried reading about the progress you’re making–keep it up, Mama! You’re Issy’s biggest advocate and whether or not you realize it, the biggest advocate for other families in your situation. You ARE a pioneer. You’re a hero. You’re a MOM!
Love you and your family! You are such a Power Mom fighting for Issy! I am so proud of you. What a long journey you have been on all these years! You must be so tired but it is all paying off…people are starting to take notice and help is coming. You are doing so great! Hang in there my friend! Hopefully, your family will have peace soon and you will all be together.
Yes Vickie, I am very tired. But it will be worth it. We all deserve to have a happy life <3
Kathleen and I are working to help your story reach others, both at http://blog.theautismchannel.tv/?p=144 and at the Autism Blogs Directory. You aren’t alone. Hugs to you and yours.
Kathleen and Kim, I don’t even know how to thank you. But I’ll try….. Thank you very much <3
My prayers are with you and your family…….we have a similar (yet less intense) situation with our son. He is 18 years old, severely autistic but has some language. We have went through iphones, laptops and many other household items when he is raging. His anger is unpredictable and usually is targeted towards me or my daughter. We have wore bruises and I’m a master at makeup to cover it. I cannot even imagine how you have lived a worse nightmare than I……..and yet it is so much worse for you. We live in a house that is ruled by my son. We are all masters at avoiding the “triggers” that activate his anger and aggression. We may end up having to place him, in the meantime we are hoping that the recent addition of anti-depressant will continue it’s positive effect. In the meantime we are all holding our breathe, just waiting for him to “go off” again.
My worry for your family is…….what happens when she comes home? Does what she learn in the facility transfer to home life?
Oh Sandy, your life sounds very much like ours! We too danced around triggers. It is very hard to parent effectively when you have to avoid saying certain words, or going certain places. Ugh!
Yes the treatment facility will begin to transition her home roughly 3 months before her actual release (that is, if we can get funding for full treatment. Otherwise, she comes home at the end of March). They train us in how to implement the behavior plan at home and we will have lots of followup care. I have a lot of hope for a successful aggression-free life.
Are you working with a behaviorist Sandy? They are hard to find. And expensive.
Hugs to you sister! You are NOT alone <3
You are not alone. So many of us have to deal with Autisum. Some more severe then others. Thanks for sharing your situation.
Kelli,
“Pioneers” is a great word. Your hard work is going to make a difference not only for Issy and your family, but for many families that are going or will go down a similar road. I am praying that by all of us working together to get the word out, we can make a miracle happen. Whenever you are discouraged, just remember there is a whole community behind you. We are here when you need us. (I’m just down the block so I mean that literally-send me an email and I’ll send you cantact info if you want). Bug hugs.., Sandi H
Kelli,
I just saw your story on upnorthlive.com. As I started to watch the video, tears filled my eyes because I know your daughter. I was her bus aide last school year but had to leave the route since I was 7 months pregnant and couldn’t handle the long route anymore. The thing I missed the most about that route was Issy. Everyday she would get on the bus, have her music playing and would spell my name over and over. She would even say Tracey is having a boy named Landon and spell his name. She put a smile on my face every morning. I knew her condition but never knew how bad it could be. For me I have never seen that side. My prayers are with her and your family. I hope this treatment program she is in works great for her. If there is ever a benefit for her please let me know. Thanks for sharing her story and for this blog. Please give her a big hug for me.
OMG!! Yes Tracy! She talks about you ALL the time! Seriously! She is responding to treatment and doing much better. The bus this year hasn’t been as good as last and I think it’s because you aren’t there. We all miss you!! Would you please write her a letter? She would love it! —> Issy Stapleton Care of the Great Lakes Center for Autism Treatment and Research 9616 Portage Rd. Portage, Michigan 49002
I would love to write her a letter, I will even send a picture of me and my baby boy. It puts a smile on my face and tears in my eyes knowing how much I affected your daughter. After I had gotten off that route the driver would tell me everyday that Issy asked about me again. She is such a bright girl, funny and always had a smile on her face. I remember when she first started on our bus and your husband had given me some background on Issy. At first I was thinking ok I have to keep my guard up with her because I was pregnant, but then I thought, I will show this little girl all the love that I can and become her friend, and that is what happened. When she would first get on the bus she would listen to her music, then after 10 mins she would turn it off and talk to me the rest of the way. We both know how long that ride is. I just fell in love with her the day I met her. I will get a letter and picture out this weekend. If there is anything I could do for you guys please let me know.
Please tell me how I can help. I have a daughter whom is five and I know the struggles of finding funds to pay for things insurance does not cover. I would love to help donate what I can. Is there a PayPal set up to fund her stay at the treatment center? Please email me and let me know, thank you
Liz, Thank you so much! Our local paper set up a pay pal for Issy. Here is the link—> http://elberta-alert.org/please-help-issy-stapleton/ Thank you so very much. $3 is 6 minutes of treatment. Every little bit helps! *hugs*
~Kelli
Watched your story on the news last night and was so surprised to hear how similar our lives are. We have a 17 year old autistic daughter that we had to place in a residential program back in May due to aggressive behaviors. Would love to chat with you on what we have done and where we are at. I am so impressed with all that you are doing to get the word out there! Hang in there and don’t lose hope!