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:
Black eye in the EXACT same place as the previous black eye.
And a week before that
Level 2 trauma. Closed head injury.
Here is my youtube video of a typical day:
[youtube http://www.youtube.com/watch?v=QPsAsRQpnCM&w=420&h=315%5D
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.
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
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.
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………”
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.
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.
I understand why Tibetan monks resort to self immolation
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
We have a fundraising page for Issy here—> http://www.gofundme.com/2fppdc
Love and Hugs to you and your family. I have a 22 yr old son with Aspergers and he has suffered rage attacks a number of times during his life – thankfully never at home, it was always at school. Although then I had the guilt of him hurting another child or teacher. Nothing that my son has done will ever come close to the behaviour that you have had to deal with. i did not watch the video because I decided that I did not want to hear the sound of you being hurt by your gorgeous daughter. But just reading your blog I knew enough to know that you are a Saint and a beautiful Mother. I am sorry that you are struggling to get help from insurance companies etc. I live in Australia and sadly many people are having similar issues as you with both the government and the insurance companies. I hope that Issy is able to complete the treatment and that it is successful and will allow her some sense of calm.
Once again you are a beautiful person and Mother and I feel very sorry for all the negative people that have commented on here, because Karma is a bitch and it will come back and bite them in the butt.
I also love all the people that have come to your defence – fantastic stuff.
Love and Hugs, Christina
Christina! Thank you for being so sweet. Issy has hit her friends at school too. The guilt is horrible when that happens. She loves her friends and she would never want to hurt them. I hope by bringing attention to this situation that we can get help for Issy and all the other families living like this. If Australia figures it out before the US I may just relocate
Hugs to you sister!!
God bless you for being brave enough to share your story (and risking judgement from clueless idiots). No one wants us to talk about the ugly side of autism. (Our ASD daughter is 13.) They want us to turn on the blue light and watch the celebrities pity themselves. Those of us fighting for adequate treatment are TIRED of the criticism and heartbreak. We want normal lives too. I wish your family all the best. Please remember to take care of yourself. We moms always put ourselves last in line.
Thank you Michelle! I hope there will be a nice coffee shop in Heaven for all of us moms to go and meet. I can picture lots of laughs, tears, and hugs
If I don’t meet you before then, please take care of YOU too!
Teehee, I vote for a tropical island resort!
Oh Kelli, I want to hug you.
Took me quite some time to read this. I can’t wait to show this to my husband when he gets home from work tonight. I know people say they don’t know how you do it. Or, they say they “know what you’re going through”.. I… KNOW what you’re going through. I too have an aggressive child. However, he’s almost 6ft tall, 210 lbs. And recently, he became an adult. Which leaves me constantly living in fear. I’ve suffered so many blows. My husband has twice gone down a flight of stairs WITH our son. How they both didn’t break their necks… i’ll never know. Broken ribs. My arm slammed in the truck door AFTER being attacked while driving.. again. He’s twice tried to jump from the vehicle. Once on the freeway. I have the Chief of Police’s direct desk line when things are getting out of control. We’re on a first name basis now. His name is Jerry. He’s such a nice guy. Twice he’s ran from the home towards the end of our street which is a truck route with a speed limit of 55mph. He was almost hit by a giant dump truck full of dirt before I was able to tackle him into a ditch. Jerry came and sat with us and directed traffic around us until hubs came to get us (he was at work. Didn’t want to put my son in the police car. My daughter (16) was at home having no idea where we were. She had been in the shower when this happened. I didn’t have my cell phone. Nor a bra (that was fun). You’re list of treatments is a mirror image of what we’ve done. A year and a half ago.. he had the ultimate breakdown. The ticker at the bottom of the weather channel was stuck on Albuquerque. Fist fulls of hair he yanked out. Punches to the face. Biting into my bicep, breaking through skin and muscle then PULLING. Bites all over my body from me trying to keep HIM from hurting HIMSELF. He wound up in an adolescent psych ward. All of this having pretty much ONE trigger. SCHOOL. He hated it. We tried every behavior plan, every reinforcement. One year he worked for a trip to California. $2,000 reinforcement. Laptops. It got so bad that the school was requesting him be placed in residential (which they had on sight) because of the levels of aggression he was showing. The anxiety broke him. We found our savior in our Psychiatrist. The neuro we were using Meds were just given. One on top of another. Then if we were lucky we could see him every 6 months. The psych, revamped everything. Removed the useless ones, and put him on something stronger. It’s not something we want him to be on long term (haldol/cogentin) but puberty was killing all of us. We’ve never placed him. I wanted to twice. Hubs refused. I was the one getting most of the beatings. I was in intense therapy for PTSD. I’ve developed deep depressions, unstable moods, extreme anxiety. Even when he was placed in psych ward, we stayed with him. (he was terrified.. cognitive abilities of a 5-8 year old).
When I was going through my hell, I blogged. (since have removed the pictures due to my mother finding my blog and I didn’t want her to see them) I had an outpouring of people pulling for us. I appreciated every one of them. What helped me so much.. was knowing my child wasn’t the ONLY one like this. I learned there are many of us out here. And, it’s ok. I have convinced myself that when puberty finally leaves us.. life will get better. With him being 18, there is not more adolescent anything. He has adult rules now. I don’t live in fear of my son what so ever (his meds have him really stable). I live in fear of him having to face THAT SIDE of the medical world. I’m going to read your back blogs. If.. i can get through them
Best of luck to you and you’re family. I truly hope you get what you need for your family. <3
Rhonda, can you tell me what your blog is? I’d like to check it out! Yes puberty isn’t helping our situation at all. I keep hoping that she will outgrow some of this aggression but I can’t just keep waiting. I’m so sorry that you have been hurt by your son. It’s the most heartbreaking thing, isn’t it? Big hugs to you sister! ~Kelli
http://pugariffic.blogspot.com/2011/06/meltdownpink-slip-cops-whole-sha-bang.html
This is where all hell broke lose. Heartbreaking doesn’t even cover the feeling of having to hit your child back in order to get away
Have you ever heard of Benjamin’s Hope. It is hard to explain in a small amount of space but you can google it or look for it on FB. Your story is heartbreaking. I recently read a book about a family with a daughter,bipolar and aggressive enough that when they had a son,the couple finally ended up living separate apartments,one of them with one of the children,the other with the other child. They also had a terrible time finding help.
[...] $765 a day, and insurance won’t cover it. Kelli started writing her story within her blog, The Status Woe, and reaching out to local media outlets. Donations started to come in. Money that helped [...]
My mother, Charlotte Seager of Northport, MI, told me of your family’s plight, as I am an autism specialist and she wondered if I had any ideas. I sought out your story after running across a fund raising site that actually has a section for fund raising for medical expenses related to autism. I wanted to start a request, but then realized I would need to post a lot of your information and felt I did not have the right. Also know people are helping and do’t want to undermine efforts. The page is http://www.giveforward.com/fundraisers in case you think this could help your efforts. Removing her from treatment during the extinction burst is worse than never treating her in the first place. I am so sorry you have had so much of a struggle getting people to listen. Best wishes to you and your lovely Issy. Happy to make the page if you want me to. Kathryn Whitaker of Vermont
I’ve experienced all you’ve mentioned with my 13 year old brain injured, post transplant grandson, who is also bigger then me. I have opted to no longer rely on non-family “professionals”, with good reasons of course.
Boy oh boy, we have story doosies don’t we
I heard about you via Jaime, he’s an old friend from Sparkpeople.com His team:
Where’d I Park My Spaceship? – http://goo.gl/YJo6q
With Love & Admiration,
Shawn
Yeah ok Tom (yeah i know you), you have the guts to post such comments? At least respect the OP views!