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Dr. Phil’s Interview with Kelli Stapleton

As many in the autism community know, Dr. Phil aired part 1 of his interview with Kelli Stapleton yesterday. Part 2 will air today.

It was hard to watch for many reasons. What we’re witnessing, in all the splendor of the mid-day talk show circuit, is the complete destruction of a family. People’s lives have been left in shreds…small pieces they must gather up and try desperately to reassemble into some sort of grotesque mosaic of life that barely resembles their old lives. Three children who once had two loving parents, now only have the presence of one loving parent.

Kelli’s actions changed their lives forever. She knows that. The reasoning behind her actions clearly shows someone who was not in a mentally competent place. It’s obvious that living with the challenges of autism for many years was a contributing factor to her lack of mental stability.

But I wish Dr. Phil’s show had been edited differently. Was it necessary to see the same clip of Issy attacking Kelli, and Kelli’s piercing screams, four times? Granted, maybe they had limited access to video footage, but still…was it necessary, and was it even right to use it? How would Issy feel, having that played on national television?

As Kelli stated, Issy is a little girl who doesn’t want to hurt her family members, she just can’t seem to control herself. She’s a little girl with a disability who was exploited. She didn’t have a choice about what was shown on the show, and that’s not right. If they wanted to demonstrate the severity of aggression, they could have simply interviewed people who have worked with Issy.

In addition, I don’t feel like it was made clear to viewers that Issy is not representative of everyone’s autism. One study has suggested that as many as 58% of children on the spectrum exhibit aggression, whether that is due to autism deficits or a comorbid condition, is unclear. Despite this, it’s irresponsible to let viewers assume that Issy presents as the average autistic person. This portrayal only serves to enforce a negative stereotype about autism that is already prevalent in our culture. It should have been reinforced that the Stapletons were living under extreme conditions that don’t reflect everyone’s experience with autism.

Despite these glaring errors, there was merit in this interview if, for no other reason, than for Kelli Stapleton to let the world know that she is remorseful for what she did. I speak for no one but myself when I say that I needed to hear that from her. I needed to know that she was sorry, that she had an emotional response to what she’d attempted to do to her child.

I believe it’s an absolute truth that every single person has a breaking point. Each person’s breaking point will vary, depending upon the life experiences and personality of that person. So whatever combination of life events and personality came together, it found Kelli at a point where she no longer was able to make logical or competent decisions.

My hope is that someday there will be a set of protocols in place to address families living with chronic aggression and violence. It is simply not possible to live with chronic aggression and not be negatively affected by it. I have no idea what that would look like, whether it was mandatory, ongoing involvement of CPS with families living under these conditions, or something else in its place, but I fear that we will not see an end to tragedies unless we do something to help these families.

Kelli has been a friend to many in the community, and has helped many struggling families. I wish she could have helped herself. I wish she would have let someone else help her. I wish her family wasn’t broken and that her daughter wouldn’t always have the memory of her mother trying to end both their lives.

I wish…

I wish there were answers.

I wish there was peace for these families.

I wish there was more compassion in the world.

And I really wish there wasn’t a part 2 to this interview today.

 

But most of all, I wish for Issy to have some peace in her life. To be able to find her way, with support, and to cease being fodder for journalists and media outlets.

As for my friend Kelli, in her own words, she should “be in jail for a very long time.”

Power and Privilege: Shutting Down Dialogue in the Autism Community

It’s been a year since Kelli Stapleton tried to take her life, along with the life of her daughter. A year seems like a good, long time, yet people at TPGA that style themselves as “autism advocates” still don’t want to talk about autism and aggression. Although aggression affects many people on the spectrum, it doesn’t fit the autism profile that advocates are trying to promote, which is one that only involves positive attributes.

 

Parents want to have the conversation about severe aggression and lack of services and what that scenario does to a family. But they continue to be shut down. Parents are told that they’re “privileged” and don’t have the right to steer a conversation that includes the topics of aggression and lack of services. Yet the conversation is being controlled by people that epitomize the very privilege they strive to censor.

 

They don’t want us to talk about the appalling lack of services, yet one of them has a 1:1 aid for her son. How many of us have a 1:1 aid? They don’t want us to talk about autism and aggression, yet they both have aggressive children. They don’t want parents to be part of the conversation because they’re “privileged”. Yet one of them went to Europe for the summer and the other to Hawaii. How many of us had summer holidays abroad? How many of us didn’t even get a vacation? How many of us would sell a kidney just to get away from the house for a single day?

 

But you know what, that’s okay. Not everyone can afford a luxury vacation, and there’s nothing wrong with someone who can afford that, except when they’re silencing other people for being privileged. People that are more privileged than most of us are not allowing you and me to be part of the conversation because they say we’re privileged. Does anyone see anything wrong with that picture?

 

They don’t want to hear that severe aggression and lack of services can have any correlation to a parent spiraling into such a dark place that they would attempt to harm themselves and their child. Yet, time and again, parents have come forward to admit that they have been perilously close to that line. And while that doesn’t, in any way, justify harming a child, there is an undeniable connection between living with chronic, severe aggression and the erosion of the mental stability and coping skills of the caregiver/parent.

 

Discussing correlation does NOT equal justification for a crime, however discussing services is a conversation that needs to happen. It has to happen so another child doesn’t lose his or her life; so another parent doesn’t feel this is the only option. It has to happen with the people who are living with severely aggressive children. It does not need to happen with the very people our children are not, the very people who are trying to silence those who need to speak.

 

In case that wasn’t perfectly clear: DISCUSSING CORRELATION DOES NOT EQUAL JUSTIFICATION FOR A CRIME.

This conversation isn’t going to go away until families finally get the support they need. The conversation won’t stop because a couple of Bay Area hausfraus with a sham of an unlicensed organization and absolutely no credentials in mental health want to shout us down. In truth, they have no more legitimacy than any other autism parent, because they have no special training or credentials beyond being a parent.

 

This conversation needs to be had, time and again, until people start to listen. This conversation can’t be closed down because there are families hanging in the balance. The conversation must continue until there is real help available to those that need it. Calling 911 and having your child taken away, parental rights terminated, and your other children taken by CPS isn’t the support and help that families need.

 

Kelli Stapleton is my friend. She made a terrible, life-changing choice that will haunt her family forever. Her children will be forever damaged by what she did, especially Issy. I don’t want this tragedy to happen to another family. More than that, I don’t want the public to believe the lies being perpetuated by advocates about Kelli, because those lies have far-reaching implications.

 

The biggest lie was that they had plenty of services for Issy. The Stapleton’s had just learned that Issy would not be allowed back in her school, either because of the aggression or because the behavior plan was too intensive for them to implement. Kelli was going to have to move three hours away from her husband and other children, alone with Issy. There would be no services waiting there for them. None. Kelli would have been completely alone in supporting Issy, whose aggression resulted in prior hospitalizations for Kelli.

The other big lie was that Kelli was just a monster that only cared about herself. Following is a quote (used with permission), from the mom who blogs at Stay at Home Crazy: “Kelli saved my life, along with a couple of people I talked to here and on the Outer Facebooks. She talked me off a ledge. I wish she had let me do that for her. I don’t want anyone to have to feel that there is nowhere to go and no one who will understand. I have been quiet on most of the discussions because I have been getting anxiety attacks whenever I read or try to write about it. But I care. About you guys, about Kelli, about all the parents and all the kids struggling to make it through.”

 

The people that call themselves “advocates” have no problem having a discussion about appropriate services and training for emergency responders after an autistic person is harmed or killed by a police officer, but they won’t allow the same conversation if a parent crosses that line?

 

Don’t let people that are far more privileged than the rest of us dictate the conversation. Write. Blog. Write to your congressman. Refuse to be silenced. Refuse to be bullied.

 

Autistic people are worthy of love, respect, kindness, and empathy, no matter what their challenges may be. Asking for help, for support, doesn’t diminish their worth or value. In fact, it may be the most loving thing you ever do.

The Hidden Autism Community Follow-Up

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The last post I wrote about The Hidden Autism Community really resonated with a lot of people, judging by the comments, emails, Facebook messages, and Twitterings I received. I’m glad that it helped people to feel less alone with the challenges they live with every day, and I’m very glad to have been able to steer many people toward a supportive group of parents—a lifeline for them.

I’m writing a wrap-up for the new readers to explain who I am, and to respond to some of the mutterings I’ve heard around town. There were a lot of great comments on the post, some with very strong words and feelings, others with varying advice ranging from diet to cannabis, and some were just words of understanding.

First, I want to thank the parents from the group I mentioned, who were brave enough to allow me to use their private comments for the benefit of the greater “community.” That group provides a place for people to bare all; the raw and painful emotions they’re feeling at a given moment, their greatest fears about the future, and their own private pain. Sometimes I just sit and watch the group as someone pours their soul out onto the computer screen, and others come along and lift them up with their kind words, urging them to not give up, to keep fighting for themselves and their child.

It’s easier for me if I break things down into categories, since there are a few things I want to talk about:

Diet

I’m not a personal believer in any autism diet. We tried GF/CF when Connor was much younger, but there was no change at all with his behavior. That said, there are many children with gluten and/or dairy sensitivity or allergies. If dietary changes work for your child, and you see positive benefits, then go for it! It’s none of my business what diet you follow in your house. DO NO HARM, that’s all I care about.

Medication

I believe that if someone’s quality of life is being affected in a negative way, and there is medication that can help improve it, then you should try. But I understand that it’s a difficult decision to make. I remember very clearly the feeling of not wanting to put all these chemicals into my little boy’s body. But we came to a point where there was no denying that his daily life, OUR daily lives, were unmanageable. Medication has improved things and made all of our lives so much better. But you have to make your own choices for your own family, and I don’t get to judge you for it. Do what’s right for you, do it by working closely with a doctor, and do no harm.

The Autism Cure

Le sigh. I am doubtful that a cure will be found. I believe that autism occurs at the genetic level. I believe in science and reason. So no, I don’t actively advocate for a cure. That being said, do I wish there was a cure in the hypothetical sense? Sure. While many thrive and celebrate their autism, there are many and more that do not. I believe that people should have choices about their life. While one person may not choose a cure, another might jump at the chance. If there was a magic cure pill, hypothetically, would I want it for my son? Yes. I would still have the same funny, quirky child, but he would (hypothetically) not suffer with anxiety. He would not be so easily confused in social situations. He would have an easier time making friends. But he would still be the same person. But this is a hypothetical, and it really doesn’t serve me to spend time considering it. If you advocate for cure, well, that’s your choice. I don’t walk in your shoes. If our autism looked like someone else’s autism, an autism with more severe challenges, I might think differently about this topic. But it doesn’t, and I don’t get to judge you when I don’t know your life. And neither should anybody else.

 

Jenny McCarthy

No. Just…no.

Language

When you say that you “hate” autism, I understand you. I have been there. Over time, I have learned that my language offends other people. Does that mean that there aren’t days when I feel like I “hate” autism – its effects on my child, the way he’s misunderstood, the pain he feels? Of course not. And I don’t believe in censoring people’s feelings and arguing over semantics. When you say you hate autism, I understand that you do NOT mean that you want to exterminate all autistic people everywhere. I understand that you don’t judge someone for being autistic and shun them. I understand that you are not saying you hate an entire group of people. I understand you to mean that you hate the struggles your child must face in their life and that, more than anything, your heart breaks for your child when they can’t communicate, or understand, or participate. You hurt for your child. I get it. I’m not going to judge you for how you express that pain. Doing so would put a wall between us, rather than drawing us together. All I ask is that you don’t say it in front of your child. Ever. Because a child might hear something different when you say you “hate” autism. They might hear that you hate them. So just be mindful. Do no harm.

Medical Marijuana

I’m very interested to see where the research and development goes in regard to medical-grade marijuana. I’ve seen some studies that show significant benefits for many health conditions. BUT, I’m not a scientist. You shouldn’t take my advice about things like this. You should talk to a doctor. Or several doctors. And since I live in Texas, and marijuana in any form is not legal here, I cannot make a statement of support for medical marijuana. Or maybe I should say “will not.” I’ve never been a fan of jumpsuits.

The “Murder Apologist” Label

First, the post I wrote on Wednesday made no mention of any murders. It wasn’t about murder. It was about families supporting each other when they’ve found no help from professionals or people in the community. No murder was mentioned, alluded to, discussed, debated, or reported. In the past, I have written about Kelli Stapleton. The reason I wrote about her is because I personally knew her. I was emotionally invested in her finding help for her daughter and family. I don’t know why her daughter was/is aggressive. Neither do you. You and I, we aren’t doctors. Being autistic is not the same as knowing what makes another person do what they do. You can speculate about it, but in the end, it’s only speculation. Because you’re not a doctor. Or a mental health professional. Or even a social worker. (If you ARE a doctor or mental health professional and you’re reading this, then I know you won’t make any speculations because you don’t know her or the family and it would be unprofessional for you to make those kinds of speculations.)

The reason I have written about Kelli is because I know through my own work in social services, as well as my own research as a member of the autism community, that there are many families struggling with aggression. For varying reasons. But having an aggressive child isn’t a reason to commit filicide. There are a lot of families that live with aggression that don’t commit filicide. An interesting study would be one that specifically examined cases in the autism community to determine whether the emotional and physical effects of aggression and sleep deprivation exacerbate an underlying mental health issue, causing someone to make that horrible, fatal choice. If a study was done and it showed a correlation between aggression in the family and a deteriorated mental state, then it would allow people to develop a screening tool to help identify the most at-risk families.

 

It would also be interesting to study whether the rates of filicide are higher in the autism community than other disability communities. I don’t hear about this in the Down Syndrome community. Nor do I hear about it in the ADHD community. It’s also not common in the CP community or in the Spina Bifida community (I’m sick to death of the word “community”). If it is happening more frequently within the autism community, then what can we do to change things?”

I think it’s more than a little odd that someone would refer to analysis and critical thinking aimed at preventing more tragedy as being a murder apologist. What would motivate someone to cast parents as murder apologists, just because they want to understand what’s happening to drive people to commit unspeakable acts? I suppose if they admitted that we were vested in preventing these terrible tragedies, then there wouldn’t be anyone to blame? Maybe? There wouldn’t be anyone to rail against? Maybe it’s a case of needing to create an oppressor in order to maintain a position of being oppressed?

If so, it’s a shame. There are real oppressors out there: politicians, school boards, lawmakers, insurance companies.

But for clarity, let me state: you should not murder your child. You should not kill yourself. You should not kill anybody. It’s wrong. It’s bad. It’s not up to you to choose if someone else lives or dies. Don’t do it. It’s better to have your child taken away and placed in a horrible group home than it is to kill them.

But really what I want to say is, please reach out to someone you can talk to if you’re drowning. We don’t want you, or your child, to go under.

 

 

And lastly…

 

This is my blog page. It is a free page hosted by wordpress.com. I don’t pay for a domain name or host. There is no advertising anywhere on this page. I write this blog because I like to write. Sometimes I write for fun, because there are a lot of funny and weird things in my head. Other times I write because I have to. There may be something bothering me, something I see in the community…like families being marginalized because the autism living in their homes is unimaginable. Either way, I don’t get paid to write this. It would be awesome if I did because then I wouldn’t need to go to a full-time job every day. But I don’t. I don’t make a dime off of this blog. In the four years I’ve been writing, I’ve received two free books (to review) and one free iPad case (to review). That’s it.

 

So if you ever find yourself not liking something I write, or maybe you didn’t like my cake story or the way I wrote about poor, dear Gwyneth, remember: you can go start your OWN site! It’s not hard. If you need help, you can email me and I will even help you do it. Otherwise, if you see something you don’t like, do me a favor…just say to yourself, self, she is a giant poopy-face and I don’t like her…so I will just click this little button over here and MOVE ON TO ANOTHER SITE.

 

This internet, it’s really a magical little box of glittery goodness!

 

Are Postpartum Depression and Caregiver Stress Similar?

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After Connor was born, I had postpartum depression (PPD). I remember wanting desperately to escape from my home, to get in my car and just drive and drive until I was far away and alone.

 I’m sorry. That was a rather abrupt beginning, without a proper introductory paragraph. But that’s rather what postpartum is, an abrupt state of being without any proper or formal introduction. You wake up one morning and it’s just there, like a collar placed around your neck, just one notch too tight.

 I remember sitting and nursing with Connor for over an hour at a time. When he’d finally had enough and drifted off to sleep, I’d put him in his crib and steal away like a thief, eager for a quick shower or a simple sandwich. More often than not, he would awaken and begin crying within 5 minutes of being put down. The crying…it was like shards of glass in my brain. The sound set my nerves jangling and my adrenaline pumping like I was in fight or flight mode. I stopped feeling human. I felt like a thing, something to which this tiny screaming baby would forever be latched onto.

 One afternoon, I remember vividly standing on the second floor landing, looking over the railing…

 But I won’t finish that thought, that sentence. I won’t commit it to writing or utter the words aloud because it would be breathing life into a memory that should stay dead. Is it fear, or maybe shame? Or perhaps it’s the refusal to acknowledge the shell of myself that I’d become, unrecognizable to me now.

 There was no judgment. Not from my husband or my doctor. In fact, my doctor was extraordinarily understanding and helpful. He assured me it wasn’t my fault and he could help me with medication. There were so many resources available to me, and I was grateful. And I was fortunate that, for me, postpartum depression ended up being mild. I can’t help but wonder what a more severe case of PPD feels like, yet I’m frightened by the thought.

 The Mayo Clinic explains on their site that PPD is caused by physical changes (hormones, metabolism), emotional factors (sleep deprivation), and lifestyle influences (a demanding baby, difficulty breast-feeding).  PPD is widely recognized as a legitimate disorder and much effort has gone into awareness and education about PPD, as well as resources for new mothers. If you or someone you know is affected by postpartum depression,  please contact your doctor right away. Here is a guide that helps identify symptoms as well as providing tips for help and support.

The reason I’m bringing up PPD is because of the similarities I see between it and caregiver stress and burnout. Parents of special needs children are not just parents, they are caregivers. Whether your child has autism, Down Syndrome, or another disability, the support needs can sometimes be exhaustive. If you happen to have a child that also struggles with serious aggression, your stress and responsibilities may seem all-consuming.

 Unfortunately, there is not as much understanding for families living with serious aggression and finding resources can be challenging. Like PPD, there can be physical changes (brain chemistry), emotional factors (sleep deprivation), and lifestyle influences (a child with major support needs) that occur when living in that environment. Although caregiver stress has not been assigned a medical label or a publicity campaign to bring awareness to it, the effects of providing care to a child with severe challenges is very much like PPD. Ongoing stress can have a significant and long-lasting effect on the mental health of a caregiver.

 Like PPD, you should seek out as much support as you can. Certainly it’s a good idea to see your own physician, but also finding community organizations that can help provide support to your child. This link provides symptoms and support tips for caregivers.

 It is my hope that caregiver stress will someday be seen as every bit as valid as postpartum depression. But more than that, I hope we get to a place where resources and support are just as readily available to special needs families as they are to mothers suffering from PPD.

The next time you hear someone say “there is never a good reason to harm a child”, agree with them. Agree with them because there is nothing “good” about PPD or caregiver burnout, and certainly nothing “good” about harming a child. You can also remind them that the reason doesn’t have to be “good” to be valid, nor does it have to be “good” to be worthy of creating interventions to prevent it from happening to another child.

Another 20 Minutes

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The power of social media…I want to share some snippets of conversations I’ve waded through in just 20 minutes on Facebook. These are autism families.

One parent is experiencing such extreme anxiety and depression, while trying to be the best support and advocate for two kids with special needs, she can’t deal with any of the advocacy conversations. She doesn’t have space for the “negativity and hate.”

Another was confessing that she’s struggling to pay the water bill, between all the normal expenses, as well as PT, OT, meds, and such. She feels like a failure at 42 and the “last place” she will go is anywhere that advocates are talking because she “doesn’t need people judging her and telling her she’s doing everything wrong.”

Another is dealing with a child that is self-injurious at school, and after changing schools and so much more support, all she can do is break down sobbing. The thought of advocates presuming to know what they’re going through is more than she can “bear or tolerate without losing it.”

Yet another…with a newborn baby, a son on the spectrum, and a husband in Afghanistan. She can’t engage, won’t engage. All she can do is put one foot in front of the other and get through each day, because she is all they’ve got right now.

I’m putting this here because I want you to know, this is just another day, just another 20 minutes. This is how parents really, truly feel about some of the advocates they’ve encountered. They don’t feel supported, understood, validated, appreciated, or like they’re part of the community. They feel hated, beaten down, singled out, overwhelmed, marginalized, and sometimes, at the end of their rope.

These people are important – their thoughts, their struggles. While I do not support Autism Speaks, they don’t make parents feel like this. So I really want to impress this upon you…where do you think parents will go after they feel kicked in the gut, or like they’ve been compared to other parents that have killed their children? It may not be a competition, but if advocates are serious, really serious about making an impact, does it behoove them to leave this in their wake?

20 minutes. So much hurt in such a small space.

Today I will spend 20 minutes listening, understanding, reaching out, validating.

What can you do in 20 minutes?

When Parents Fall

I fell hard last night, you guys. It’s really hard for me to admit that.

The last couple of weeks have been rough for Connor at school and the after-school program. Without getting too specific, his hyperactivity has been out of control. Every task, Every. Single. Thing., has required herculean efforts of wrangling him to get it done.

Day after day of negative reports, coupled with another day of homework struggles was enough for me to snap. I left the room sobbing and shut myself in the bedroom. Hubs was working late again, but was on his way. I told Connor I needed a time-out, which was an understatement.

One of my personal challenges is black-and-white thinking. When upset, I tend to see things in a worst-case-scenario kind of way. “If I can’t fix this, it will never get better and his future is doomed.” It’s not rational, logical, or helpful. But when I get that far into my emotional response, logic doesn’t matter.

Really, I don’t care for being emotional. I’m generally pretty stoic about things, because I know that progress can only be made by being calm and focused. But everyone has a breaking point.

I reached out to a group of friends that share this kind of parenting journey with me. Within minutes I had numerous text messages and phone calls. I cried, ranted, and unloaded every sad, angry, and hopeless thought I had. And I wasn’t judged. Nor was I given false hope. Instead, they took each piece of me, dusted it off, and put it back into place. They reminded me of what I needed to do to keep moving; call a school meeting, move up the doctor’s appointment, make some accommodations for homework. And without doing it intentionally, they reminded me that there were so many families out there facing far tougher challenges than I am.

There was never any danger that I would have hurt myself or anyone else, but my “breakdown” lasted about an hour, before slowly starting to dissipate. Today I’m left wondering what happens to people that don’t have someone they can call, someone who understands their unique challenges? What about those that are dealing with a situation far more extreme than mine?

Today I’m back to being stoic as I make phone calls and plans to address the issues. But I’m still worried about you guys. Do you have someone you can call if things get bad? Do you have a safety net if you start feeling like it’s too much to handle?

Here are some general numbers of support. Please put these in your phone, or hang it on your fridge. Don’t let yourself get caught in a bad emotional storm without a life jacket or two.

help numbers

One last thing. Don’t ever let anyone tell you that online friends aren’t “real” friends. Some of my best, most precious friendships are with people I’ve never met in person.

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