Last week I posted a really wonderful note from a mom to her autistic child. I do believe that for every yin, there’s a yang, and thus, as a counter-balance, this week I’m posting three excerpts from a blog called The Status Woe, written by another mom of an autistic child. Kelli is so much better than me at inserting gifs!
This is from August 27, 2013:
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.
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!
Then this is from September 3, 2013, the last post “before”:
If there is anything I’ve learned in my relatively eventful life, it’s that I’m not special or unique. If something has happened to me, I know it’s happened to someone else.
I have to admit that I’m suffering from a severe case of battle fatigue. I’m so happy that Issy has successfully completed treatment. It was a miracle making that happen. But I never once had any peace or rest. There was a constant (and very real threat) that funding would be pulled. It was not as exhausting as getting my ass kicked (literally) every day, but there was no time to lick my wounds while she was in treatment either.
Managing her transition back into “normal” life has been complicated. The behavior plan is reducing her target behaviors. The behavior plan is our miracle. So how do we best ensure the integrity of the behavior plan as we transition home?
Home: We obtained the single opening for the Michigan children’s waiver for the whole state! So Issy has funds for staff at home. Her very own human for nearly all of her waking hours! Can. You. Imagine?! I found a staffing agency that has been following Issy’s story, wants to help her, and is thrilled to take the training. They know the behavior plan, and are working hard to understand it and implement it perfectly. Seriously, there is no room for any mistakes. They get it. And as silly as it sounds, you know someone will be successful when they work not for just a paycheck, but they really invest in the program. That’s what I’m feeling here. They are asking great questions of the behaviorist and learning a lot in the process. Things that may help other clients too! Win/Win!!
School: School won’t be a problem. Issy’s daddy is the principal of the building. He knows all of the key players and Issy will have her own aide. Her very own human there too! Her aide can be trained in the behavior plan (although not difficult, there is a lot to it.), mom (me) plans to send all of the flash cards, pictures, Velcro boards, and workbooks she has been using, to the teacher (if you’re an aba or vb person you know what I’m talking about. Crates and crates of work,amirite?!). She will spend time in classes she can participate in like PE, gym, art, etc. and do the more difficult academics with the aide in a quiet room where she can be reinforced appropriatelyfor a non-preferred activity (in real terms: she will get a sh!t load of tokens for working hard and not losing her mind over a math problem). Community volunteers have offered to come in and teach her tap dancing, oil painting, and cake decorating! Did I mention I live in a great place? And our school is full of awesome?
Work: Our local church is providing a space in there building where she goes to “work”. They are giving us a key and everything! So after school Issy will go to “work” when her siblings are participating in sports. I talk about it more in this blog post here. Basically it’s just crafts. But I hope to find something she enjoys and is good at. I can then build a website and sell her work. Or maybe we’ll figure out something totally different. Either way, she is going to “work” everyday.
It’s all coming together….
It’s all coming together
I mentioned battle fatigue earlier. Well…….I made a huge tactical error.
Several weeks ago, the special ed teacher that Issy will have in her home school district requested to the superintendent that Matt (Issy’s daddy and the building principal) be taken out of the professional loop since he is a parent. I get it. He needs to make decisions as a parent. You wouldn’t have a doctor do surgery on their own child. Right?
This week the special ed teacher came to the same behavior plan training meeting as my home staff. It was clear within the first hour that there were going to be problems. She was trying to come up with ways to tweak the behavior plan so that would fit smoothly into the school schedule. I get that too. She has other kids to worry about. However, we are NOT FUCKING WITH THE BEHAVIOR PLAN. She was also not on board with me providing the work for Issy. When we were alone, we had a very heated discussion. And by heated discussion, Imean we were both yelling. She even yelled this gem: “your husband is my boss, not you!” . However, there was no swearing (win! Remind me to tell you about the time I told the clinical director of our cmh to “munch my c*nt”. Not my proudest moment but I was pretty mad. And I’m not entirely sorry I said it.)
When it was time for the meeting to resume, she wasn’t there. She decided not to finish the training. While the rest of us were practicing the behavior plan, she was making phone calls.
The next morning, my husband and I were called into a meeting with the school superintendent and a representative from the intermediate school district (the ISD is what provides supports for special education students in the local school districts). Because my husband was taken out of the information loop (remember he is the building principal), we weren’t sure what the meeting was about. We thought it was to work out the obvious kinks we were going to have since I clashed so badly with the teacher. Talk about options and how to make it work. But no. The meeting was to tell us that Issy was not going to be allowed to go to school there. Quite coincidentally, the ISD representative used some of the phrases that I had used in the argument the teacher, so I think I know where that info came from. The ISD representative suggested I home school, and mentioned that I was “intense” (I get that a lot).
So less than a week before school is to start, she is uninvited.
I am devastated.
My husband is gutted.
My husband is an administrator, sure, we never expected or wanted special treatment. Only to follow the behavior plan from the behaviorist and throw some flash cards in front of her (notplaydough, she is a smart kid. Time to work on science and other subjects). Just for everyone to do their job.
What exactly is wrong with a doctor performing surgery on their own child? Is there a large sample size of doctors doing such a thing? And if so, what did they find? The doctors weren’t careful? The doctors took short cuts? The surgical staff was more likely to treat it like ‘party time’ or be more serious since it was the doctor’s child?
I have ruined everything. I should have stroked egos.
For 12 years, I have done a fabulous job of complementing professionals to stroke egos, kissing enormous asses to get needs met, flexing my muscles when necessary, and begging when it was called for.
I’m a firm believer that you do not need to be a bitch to be an advocate.
But there is always this too:
With this teacher, I pushed when I should have pulled, bobbed when I should have weaved, bit when I should have kissed.
There is more. Of course, there are two sides to every story, you are only reading mine. The teacher insists this is an ISD and district decision. And the teacher is correct. The ISD makes a recommendation to the district of what they feel is best placement for the least restrictive environment for the student. There are also all the details of this meeting that make it perfectly legal. Pulling this rug out from under us was done the right way, well, legally anyway. Yes, we can appeal. Yes, they are offering us an alternative option. It is a program she was in before. She was not successful in that program. Also, did I mention that it’s a 2 and 1/2 hour bus ride – one way? We aren’t going to do that to her again. I’m sparing you every crappy detail.
And let’s not ignore the obvious. Issy is a child capable of great violence. Many a school would be unwilling to take her. Well, except for the public jr high she currently attends (while in treatment). When I told her current teacher about our local school’s decision, she choked up, offered to call our superintendent, then gave me the phone number of an education attorney. How awesome is she?! This is why we will likely keep Issy with her. So I’ll move to Kalamazoo, three hours away from home, my husband, and my other two children to do what is necessary to meet Issy’s needs. I wish though, the school could have tried. Matt and I aren’t unreasonable. If it wasn’t going to work, we would be the first to pull her out. *sigh*
So, let me tell you again. I am not special. I know this has happened to some of you. Did it happen in a school setting? Was there one person who is paid to work with children or families in crisis and worked hard against you because they were mad at you? Or didn’t want your child? Could this happen with a social worker? Let’s say you really pissed him/her off. Could they stop you from getting respite hours? Or therapy?
I love the saying:
For those of you who follow my blog and are in a position to help others, can you put checks and balances into place so “power plays” will not happen? It’s a complicated endeavor, for sure. A power “player” must be in a position to manipulate a situation and people. Seriously, this is the stuff of a John Grisham novel or JD Robb book (don’t judge me, I love trashy novels).
I wish I was a psychologist or an anthropologist. I love the study where scientists acquired a jail and had volunteers act as prisoners and others were guards. They had to end the experiment because of the abuse. You can read more about it here. Studies aboutStockholm syndrome are also facinating. How about mob-mentality? What turns a person from someone unlikely to act in a violent way into someone who blindly follows the crowd?
I bet there is some good information about things like this. Does the power player perform in predictable ways? Do they seek power because they somehow feel powerless? If they work in high stress jobs, is this a sign of burnout? If they get angry at the parent, yet target the child, should they be held accountable ? Are they good employees who have just gotten “out of hand”? I have no idea. Frankly, having a child with autism seems easier than dealing with the above questions. But I know some of you are really on top of this sort of thing. If someone knows of more studies or maybe some books, please pass it on. Because I know this isn’t the last situation I’ll be in. I need to handle it differently.
Conversely, are you a power player? Do you get angry at parents? Do you take pleasure in petty revenge? Do you manipulate others (bosses/peers/ colleagues)? Do you believe that you are awesome at your job? When you go to trainings or workshops and find yourself always board because you know all of the information? Is everything about you and not the child or children you serve? If so, you aren’t broken. It’s just time to evaluate what you’re doing, or how you’re behaving. When you know better…..
And to add a little more:
If you work with families, please try to minimize the soul shattering disappointments you hand out. There are ways to say ‘no’ without being inhumane. Please don’t make your problems mine. I’m sorry you have 22 kids on your caseload, but that doesn’t mean Issy should be denied consideration because you’re busy. Please don’t tell me there are 50 other people on a waiting list to use general fund dollars. Please don’t tell me that when I’ve found the perfect staff that Medicaid will only reimburse $16 but staff charge $18. At least let me believe you’re trying to figure it out. It’s my job to try to do my best for my daughter. It’s your job to be professional and help me do mine (and only one of us is getting paid).
There is so much more to say. I’m just too tired to write more.
All my love,
Then…according to authorities, Kelli attempted to kill her child and herself. There’s no blo-by-blo blog about that, just a news story. They both survived…barely.
Sorry to spring this on you. One minute, you think life is going fine, the next day you wake up and Republicans are controlling the Senate. I know this isn’t a joke…no, it’s not even a singular case. Something like it happened in Alabama in December. On Monday, a mom in Oregon threw her autistic child off a bridge. And today, as I was writing this post, this multimillionaire, Gigi Jordan, was found guilty of manslaughter in the death of her autistic son. I don’t know Jordan at all, but when you read the details of the incident and trial, her claims of trying to prevent sexual abuse sound rather facetious. She *seems* like another proud one-percenter, in the American tradition of O.J. Simpson and John Dupont (Foxcatcher coming soon to a theater near you!) who, with enough money, can get away with murder.
I ask you to linger longer on the story of Kelli Stapleton and her daughter Issy because…here you read that Kelli is a normal person just like us. I love Dar deeply, but that love…comes with a lot of pain. Pain that he doesn’t seem to remember things, pain that his only method of communication is five-alarm-fire screaming. There is a certain fatalism that comes with living with pain like this. Now…I feel VERY lucky compared to Kelli (and perhaps to the other three murdering moms; I don’t know their stories as well), because *usually* Dar is pleasant and non-confrontational. He’s never hit another child or us, really. He’s bitten, but usually himself, and only when he’s being asked to do something he hates (like speaking). I guess what I’m saying about Kelli and Issy is partly There But For The Grace of God Go We. It’s also that I’m *exactly* as worried about the long-term plan as Kelli and these other moms obviously were. Tonight, for a different film class, I’ve chosen to screen a film that I’ve never before shown in a class – One Flew Over the Cuckoo’s Nest (1975) (I also love the book, for different reasons). I often cited Cuckoo’s Nest when people asked me about my all-time favorite film – before Dar was born. I haven’t seen it since before Dar was born. I wonder what emotions will arise as I watch it tonight.
Whatever happens, thanks Kelli, for a blog that reminds me that there’s a real, relatable person behind some (if not all) of these stories of murder-suicide. Because I feel like I get her, she helps me not to go as far as she did. That may sound like a contradiction; to me it makes perfect sense.
Here’s the only post on the blog “after”, from May 29, 2014:
Dear “Friends of Kelli,”
While visiting with Kelli this weekend, we realized it’s been 9 months. In the past 9 months we have learned even more about what an amazing person Kelli is and how much she is loved by her family and friends. In the past 9 months Kelli has faced significant personal challenges besides being incarcerated. As her friends, it has been hard for us to watch her go through such a difficult time in her life while remaining helpless. We support Kelli to remain hopeful and then there are days when she supports us to remain hopeful. Kelli wants us to thank everyone who has so generously offered words of support, donations, and action on her behalf. She feels lucky to have people in her life who are willing to remind her she is worth it and she is loved!
As the trial grows closer, we continue to struggle with the financial aspect of this situation. Right now we are seeking funds to hire an expert witness we believe will give important insight to the judge and jury at her trial. Currently, Kelli has no assets to speak of and we are growing extremely concerned about her future without this expert witness. The charges against Kelli hold a maximum sentence of life in prison with the possibility of parole. Our friend has been broken for a long time. We all know Kelli has struggled with her daughter’s continued aggression toward her and her family. We know how hard she fought in attempts to give her daughter a better quality of life that included community support and a home free from aggression for her family. No family should have to struggle as much as Kelli’s family has. Since she has been gone, her daughter continues to struggle with the same aggression, the only difference is there is only 1 parent left to coordinate her care while continuing to raise their other two children.
OUR FRIEND NEEDS OUR HELP! We currently need to raise funds in EXCESS of $20,000 for an expert witness crucial to Kelli’s defense. All donations make a difference whether you are able to donate $20 or $2,000! Please give what you can, share on your blog or website, and pass it on to those who can also help. Below is the link for donations. Feel free to copy the donation link. If you’d like a paypal button for your blog, please email us at firstname.lastname@example.org
Click the link below to donate online. You do not need a paypal account to pay by credit card, just click the link on the page to the left that says to pay without a paypal account.
You can also donate by check or money order by mailing a check in Kelli’s name to the address below. All funds raised go to Kelli’s personal account.
If you would like to donate via check, please make it out to Kelli Stapleton and mail it to:
PO Box 58, Frankfort, MI 49635
PLEASE help our friend Kelli…she needs our love, support, and a strong defense.
Please give what you can.
Thank you so much.
~Marlowe and Vickie
P.S. One of Kelli’s friends has taken action to get the ‘postcard only’ decision by the sheriff overturned. She was successful! Kelli can once again receive regular (PLAIN) letters! So keep on writing!
See, now I’m worried about you, the reader! What happens if you read this and think everything is going well, and then next thing you know you’re being asked for money for legal bills? You know what though? I don’t think so. Somehow I don’t think so. “There is always hope.” – Aragorn in The Two Towers