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.
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.
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!!!!
Now… let me talk about my daughter!!!!
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?)
Autism+hormones+whoknowwhatelse=a large can of whoop ass
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.
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.
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.
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!
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
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