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Category Archives: advocacy

Dear Reader

Dear Reader

Dear Reader,


Or should I say, friend? If not friend then surely fellow human, at the bare minimum. Just know that you are more than just a reader of words. You are a fellow soul who found, perhaps, at least some enjoyment from the stories I’ve shared with you.


My sincere goal was to share moments from our lives as they intersect with autism and ADHD, and maybe, just MAYBE someone else might find a laugh, or information that would be helpful in their lives. I wanted to show autism in a different light; one that finds laughter and joy in the chaos, one that is not doom and despair, but simply new challenges to overcome with some laugher along the way.


It never came to mind to discuss our race, religion, or cultural backgrounds. It was never pertinent to the story. But I tell you now, Dear Reader, that my family is biracial. The particulars  don’t matter, of course, just that we are. The stories you’ve read about Connor, they are about a boy with two races.


And so I ask a favor of you now, Dear Reader. If anything I wrote made you laugh, or cry, or look at someone or something in a new light, please allow me this one favor of you. Regardless of how you chose to vote in this election, please reach out and call your state representatives about the President-elect’s appointment of Steve Bannon as his chief of strategy. Please call on your senator or representative to condemn the appointment of a known white nationalist and bigot. Please do this for children like mine, who deserve to have public leaders that respect and celebrate the wonderful diversity of America; diversity that also includes disabilities.


The following link is a site with a call script, for those who aren’t sure exactly what to say when calling their government officials. You can also just speak from your heart, as long as your voice is heard.


And THIS is the link to a site where you can look up your state’s elected officials.


Thank you again, Dear Reader, for spending some of your time here. I think you know me enough by know to know I wouldn’t ask this of you if I didn’t feel it was frighteningly important. So please, share this with others who might also lend a voice.


Those who do not share my opinions, I wish you the best on your journey. There is no ill will here, none given, and none taken.


All my gratitude,


Flannery Sullivan

What’s In a Name?

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What’s In a Name?

Something that comes up from time to time is the subject of my name. Although I started blogging on a whim, I made a conscious decision to use a pseudonym as a means of protecting my son’s anonymity. Since one of my hobbies is genealogy, and there is a lot of Scots-Irish ancestry in my family, I chose a name that represented that. And I was fortunate enough to be able to tie in my name to the name of this blog, as an homage to a wonderful writer.


In addition to my pseudonym, I don’t post pictures of my son where his full face is showing. I could go into all the reasons why I made this choice. I could talk about him not being of an age to give informed consent to put his face or name out there. But all that really matters is that I gave it considerable thought before making the choice that I thought was best for my child.


It’s odd, though, that the name issue comes up. If I blogged under the pseudonym of “Tammy” or “Claire”, I suppose no one would say anything. It’s funny that my choosing of a unique name is what makes people question me. I get the impression that people think they would somehow know me better if I used my real name. But you wouldn’t. If you don’t know me through my writing, then you will never know me. And believe me when I say that you can know everything about a person, and still not know them. There have been people in my life that never uttered their thoughts or opinions on things, always playing it safe. And all it does is leave me with an empty space when I think of them, because I will never really know them.


Many bloggers have chosen to put their child’s face and name out there, as a proud declaration about autism. That’s their choice, and I don’t judge them for it. Some of my very close friends share their children’s beautiful faces. They made a choice for their children, just like I made a choice for my child. Different choices don’t make anyone better than the other, just different.


How we write, and the different choices we make about what we share in our writing is very similar to advocacy. People choose to advocate in different ways. For some people, autism is something they celebrate. They make a concerted effort to never publicly discuss autism in a negative way. Others experience autism in a different way and, for them, it’s not always a positive experience. They might choose to write about autism in a more honest way that reflects their personal experience.


My approach, in case you’re a new reader, is one of honesty. This blog wasn’t created with advocacy as the main concept. I created it so I would have a place to write about my feelings and experience as an autism parent, as well as other random things that come to mind. I write as honestly as possible because, as a reader, I don’t like reading things that leave me feeling like I’m only getting part of the picture. If I read a blog and it leaves me feeling like I’ve just spent time with a used car salesman, someone who tells you about all of the great and wonderful features but neglects to tell you that the air conditioning doesn’t work or the car was in a fender bender, then I usually don’t come back to that blog. That’s my choice, because I want to experience authenticity when I read about people. But some people prefer a purely positive experience, I suppose. Some people can’t handle anything negative, so they want to hear about fields of daisies.


And since the spectrum is so very vast, I think that different people need different kinds of advocacy. People that can communicate and function reasonably well will advocate for equality and inclusion. But others that have found no way to communicate their needs will have someone advocating for them, and they need much more than equality and inclusion. Each is doing their part to advocate, but ultimately their needs and sense of urgency is different.


Imagine the absurdity of someone insisting that all bloggers must use only their real names, and photos of their children must have a full frontal view of their face. How laughable would it be for someone to presume to tell others how they should write about their family on their own blog?


It’s about as laughable as telling people that they all must advocate in exactly the same way, using exactly the same language.


There is someone out there right this moment, who is in crisis with their child. They are desperate and they are frightened, and right now they don’t have the kindest things to say about autism.


There is also someone out there right now who is learning to celebrate their uniqueness and feel good about everything that makes them different. They want people to know that autism isn’t always something to be feared.


Can both of those examples be right? For me, they are just as right as the fact that I blog as Flannery, and you blog as Joe.

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:


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.


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.


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 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!


Is TPGA Committing Tax Fraud?

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Since today is tax day, I’m republishing this post for those of you that may be tempted to write off donations to this organiation as tax-deductible.


It’s hard to know which non-profits are really worthy of support, especially monetary support. We’ve all heard the numbers about Autism Speaks and how so much of their funding goes to fat salaries for upper management, rather than services. We have to do a little work to be educated about which organizations are trustworthy and deserving of our support, especially when it comes to making donations. Autism families are already stretched thin, financially. I know we are, which is why I’ve always made it a practice to verify an organization’s tax-exempt status before donating money or offering support.

As many of you may know, Thinking Person’s Guide to Autism accepts donations and assures the public that they are tax-deductible. Their page states that they are owned by the Myers Rosa Foundation, which is a partnership between Shannon des Roches Rosa and Jennifer Byde Myers. The Myers Rosa page states clearly that they are a non-profit, 501(C)3.

tpga screen shot


myers rosa2

If you have donated money to them, you may need to consult a tax consultant. I’ve confirmed with the IRS that the Myers Rosa Foundation does not have a non-profit status, nor have they ever applied for one. Ever. There has never been a form 990 filed for them, which is required of non-profits. They filed as a corporation in 2011, and never filed for 501(C)3, yet they are claiming to be a non-profit. Additionally, last week I contacted Shannon de Roches Rosa for verification of the organization’s tax status and received no reply. This evening I contacted Jennifer Byde Myer and she confirmed that they had never filed for non-profit status.

myers rosa

As a self-described advocacy group, I think it’s important for the public to know that they have misrepresented themselves and have taken money from autism families under the guise of being a non-profit organization when, in fact, that is not the case. I know we all want to support organizations that represent our children, and this is probably shocking to many of you. It was to me. More than that, it was a disappointment. It makes it so hard for any of us in the community to know whom we can trust when an advocacy organization can’t even be trusted.

Beyond the issue of public trust, there is also aspect that TPGA actively works to direct the conversation about autism in our community, while also calling into question the ethics of other organizations. It lends no legitimacy to cry foul on how Autism Speaks delegates their funds when you’re casting that stone from a glass house.

I encourage you to call the IRS yourself to verify this information. You can also go to and verify that you won’t find them listed.

There was originally no intention to post this information, but I’ve decided that this information is something that the autism community needs to be aware of. We spend so much time working our tails off to get our kids the supports they need, often at the expense of our own well-being. And to have an organization taking advantage of our families by misrepresenting themselves is a breach of our collective trust.

My hope is that this will be a good lesson for all of us, to research organizations before we choose to align with them or donate our time and money.

Edit: According to Linkedin, Shawn Myers (husband of Jennifer Byde Myers) is listed as the founder and Director of Myers Rosa Foundation from 2010 to present.

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?

Parenthetical Advice

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Hi. November was a crazy, hectic month between the holiday and trying to keep pace with NaNoWriMo. Prior to that, there were a couple of school meetings that I wanted to write about, because the result was getting some better support and extra accommodations for Connor.

The beginning of the school year was quite rough, and I called a meeting in September to talk about supports. One thing that came up was that after I dropped off Connor in the morning, he wasn’t showing up in class until 10 minutes after the bell. I asked the principal if she thought we should address the issue (The reason I called the meeting was mainly to discuss this very issue. But there’s a game of charades that goes along with parenting a special needs child. You can’t make demands and voice your disapproval and really gain anything. That’s because it’s all a game of ego-stroking. Much like real life. So one must smile like a half-witted court jester, and ask seemingly stupid questions, like “Do you think we should address the issue of my autistic child going missing for 20 minutes each morning?” When the answer is, OF COURSE WE SHOULD. But the staff at the table know full well that they are in a precarious position and the district could face a lawsuit, so you sit there and politely ask, “What should we do?”). The principal was very willing to work with me and decided to appoint a teacher to be on hallway duty and be responsible for being the point person for Connor, and ushering him to class.

With that issue resolved, we moved on to homework. The pressure of a 7-hour-day spent holding himself together as best he can builds up and releases when we get home. Having him sit and do homework that goes on for more than 20 minutes just causes more frustration and meltdowns. So I decided to ask the staff about homework accommodations (Hey. Kids with IEPs are supposed to be provided with accommodations. It’s like, the law. So basically I sat there and asked for something which I knew we were already entitled to, but in doing so I transferred the illusion of power across the table to the people that could make this the best year ever, or worst year ever, for my son.) We were able to negotiate limiting math homework to 15 minutes. In addition, since writing is such a challenge for Connor (And it will likely always be a challenge. I’ve had the school conduct two OT assessments in which he barely scored in the passing range and has not “needed” OT provided by the school. So that is an important point to absent mindedly bring up at convenient times like this. “Well you know he struggles to write, even though he hasn’t needed OT, according to the school eval, but maybe we can find a way to accommodate him so that I don’t go requesting an expensive independent eval?”) I asked if his nightly Reader’s Response question could be answered via my recording it, instead of him having to write it out. I stressed that the point of the Reader’s Response was to get them thinking critically about what they read, so removing the pressure of writing would make it easier to focus on that. The teacher agreed and now he reads nightly and I use the record feature on my phone to ask the question and get his answer. Then I just email it off to the teacher. So much less pressure and unnecessary time spent trying to reduce his answer to the fewest amount of words because he detests writing so much.


But then I got careless, and I asked about ESY. The principal felt it was far too early in the school year to consider it, and she mentioned the “regression” tool that they use to decide if a child needs ESY. I casually mentioned that my understanding was that it wasn’t the only criteria for ESY (I admit it, I was pretty assertive. A couple of summers ago Connor was kicked out of two summer camps, due to behavior. Last summer, having ESY half day and camp the other half, he did beautifully. If you comb through all the legal junk, you will find that if there is a serious disruption that causes hardship, that is also a qualifying factor. In short, I’d already done the homework, but I had to back pedal and stroke egos, like a girl in a massage parlor specializing in happy endings.) Since we were due to have the official IEP the following month, I acquiesced and told the principal that I was fine with revisiting it then, because I wasn’t sure if I was correct anyway, and wanted to read through the department of education policies to make sure I wasn’t speaking out of turn, (In other words, I let her know I was coming with a huge stack of paper, with all the legal parameters highlighted for her convenience.) and that I appreciated her willingness to table it until then.


At our official IEP meeting in October, the very first agenda item was the principal informing me that he did, indeed, qualify for ESY! I thanked her profusely, and encouraged her to have another cookie. (Yes, I brought cookies. I actually really like his teachers, very much. And I want them to know I appreciate their hard work. Also, it’s a strategy to give every impression that you are kind, thoughtful, and reasonable. Reasonable is the important adjective, because if you ever have to push things to mediation, you don’t ever want someone to offer an impression of you as being overly emotional or controlling. And you want them to know that you will scratch their back, if they scratch yours.)


So far, the school year is proceeding well. We have a nice routine going, and both the gen ed and special ed teachers are fabulous. His gen ed teacher even went the extra mile. Connor had been having an ongoing feud with another boy, that Connor would fixate on every day. The teacher pulled the other boy in and talked to both of them, asking them what things they like. She found some common ground, and got them to shake hands and call a truce. In the past, issues like this have been ignored, or just considered “normal kid squabbles.” But it was more than that to my kid, and she really got that. As a result of her taking the extra time to do that, we have avoided further issues.


These are the people that support our kids every day, and it’s important to try and have a good relationship with them. Teachers work hard, and the more we can support and encourage them, the more likely they will be to listen when we feel our child needs some extra help. It’s the administrators that are more complicated and require more sophistication to gain their support. (Let’s face it, they have a budget to follow, and they’re going to play hard ball to meet that bottom line. You’ve got to be prepared and have a solid case to get what your child needs. And if you can make them feel like it was their idea, all the better.)


Hope you find some of this helpful when you’re tackling challenges with your child. Make no mistake, this is HARD. But quitting is not an option. Failure is not an option. You need to read up on your state laws regarding special education, as well as knowing IDEA. And remember, even if you need to actually pull in an advocate or lawyer, a batch of chocolate chip cookies couldn’t hurt either.



Autism Speaks Does Not Speak For Us – THIS is Autism

This is dedicated to Autism Speaks co-founder, Suzanne Wright, in response to her call for action today. I will not provide the link to the post.

My son, Connor, is 8-years-old. He gets dressed, brushes his teeth, and ties his shoes independently.


Connor tells us he loves us every single day, and he looks us in the eyes when he does it.


Connor played on a soccer team last spring. He also loves to ride his bike, without training wheels.


Connor sleeps through the night (mostly), is toilet-trained, and asks questions about everything he can think of.


Connor loves to tell jokes and do silly dances. He lives to make people laugh.


Connor’s teacher sent me this in an email yesterday: “I was really proud of him at the end of the day when he witnessed another student being unkind, he told the student he should apologize. I was like WHOA!”


Connor saw some brief news footage the other day of the typhoon in the Philippines. He asked if it was really happening, and I told him it was. Then he asked what we could do to help those people.


Connor loves to help people. He holds doors open for others whenever he enters a building. He has said he’d like to be a police officer someday.


This is autism.

This is autism.

You don’t speak for us. Only we can speak for ourselves, so hear my words: Autism is not a tragedy. The only tragedy here is the way you perpetuate a negative stereotype about autism.

We do NOT support Autism Speaks or their portrayal of autistic individuals.

Maybe it’s time you learned what autism really is.

Bob Iger, Let’s You and Me Have a Chat

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I’m going to dispense with the formalities. Since I’ve seen Businessweek refer to you as “Bob”, I’m sure you won’t mind me doing the same.

We need to talk, Bob. I don’t mean to be critical and, in fact, have held high regard for the Disney empire for many years. I’m sorry I never took the time to write before, to let you know what a great job you’ve all been doing. But I find myself compelled now to write to you, to talk about this new DAS (disabled assistance system) policy nonsense that replaced the GAC (guest assistance card).

Frankly, you’ve pissed in a lot of people’s Wheaties, Bob. I get it. No one likes to feel taken advantage of, and there were certain people out there taking advantage. Rich socialites from New York, who reportedly pay a service to secure them access to the GAC for their trip to the Magic Kingdom, is one example. They’re scum, Bob, and there will always be scum in this world. That’s just the cold, hard truth. And believe me when I say that people like that infuriate me – using their privilege to secure MORE privilege. It’s despicable.

But the changes to disability access? Frankly, they aren’t well planned. I know, I know, you’ve got the world’s best corporate minds running things over there (and paying them a lot to do it well, too), and you trust them. A man in your position needs to be able to trust the people that work for him.

But the thing you’re all missing is that a HUGE proportion of people that use the guest assistance accommodation are autistic. And if you know anything about autism, you should know that autistic people have major challenges with communication, social skills, transitions, and sensory input.

The new assistance program requires the person to check-in for a ride at a kiosk and receive the ride time (which is the amount of time it would take to stand in line), and come back to the ride at that designated time. In other words, bring the autistic child to the kiosk of the ride they are perseverating about, get a card that tells you to come back in 90 minutes, and spend the next 89 minutes trying to distract your autistic child with a churro, while they meltdown and completely fall apart because they don’t understand why they have to wait. Repeat this over and over throughout the day.

Does this sound like fun to you, Bob? Does it sound like a program that is actually providing any assistance to disabled people? It sounds like the exact kind of routine an autistic person would enjoy in Opposite World.

Yes, Bob, of course I am the parent of an autistic child, and that’s why I’m writing you. But I’m also writing because my husband and I just decided to save up for a Disney trip next year. Our son, now 8, is finally at an age where he could manage a trip and enjoy what we are doing. At least I thought so, until I heard about this new change.

I know that some people might think I have no right to complain because, as a corporation, you can do whatever you want to do. And that’s true, you can. But the point of a business is to produce a product that people want to buy. A business is only as good as what they offer their consumers. And I can guarantee that 1 in 88 consumers is not going to be happy with this thing you’re calling “assistance.”

Bob, let me tell you something else about autism. Our kids have to work so damn hard for every single thing; every skill they learn, every bit of support they get, every relationship they forge. My son already knows he’s different, and we’ve talked to him about autism. We’ve already heard the words, “I hate my stupid brain, I wish it wasn’t different.” If you’ve never heard those words from your child, then consider yourself lucky.

My son’s childhood has been spent learning social skills that come naturally to other children, and being evaluated so that schools can try to find the best way to support him so he can learn the materials the other kids learn easily. He’s been called weird, stupid, jerk, mean, and idiot. He may need some level of support for the rest of his life. Our daily life is complicated and messy, but full of love. And the one thing, THE ONE THING we thought we could do with our son was to take a trip to a Disney theme park and finally get a break by being able to move easily through the line and actually enjoy the experience. And let me say that my kid is easy compared to other children that have more severe challenges.

Once again, the privileged few have triumphed over the underprivileged masses. Those New York socialites may never get to run that scam again, but they’ll still get to go and enjoy the park, unlike many autistic kids that can’t now.

I’m hoping, Bob, that you can see the plight that autistic families are in and find another way to make this program work for us. I want to believe that Walt had a vision for the Disney parks that made it enjoyable and inclusive for ALL children.

We weren’t initially sure if we were going to Florida or California for our trip. It looks like the decision has been made for us. We’ll go to California so we can visit Knott’s Berry Farm, Sea World, and the San Diego Zoo. Oh, and our friend Dawn, whose family ALSO won’t be dropping a dime on Disney products or theme parks as long as their policies are exclusionary to the disabled population.



Have You Been Carly’d Recently?

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Carly Fleischmann is an amazing young autistic woman who has gained notoriety for achieving a “breakthrough” in her “severe autism”, learning how to communicate by typing on a computer.

Most of us have already heard of Carly. We make it our business to keep up with autism news stories. And make no mistake, Carly IS amazing. It’s just that…she’s also possibly an anomaly.

When people see Carly’s story on 20/20, they are inspired. They’re inspired because people don’t expect someone with severe autism to be cognitively equal to non-autistic peers. It’s the truth. When we see someone that can’t communicate, can’t control their body movements, and their behavior is challenging, we just can’t imagine that their thoughts and feelings could mirror our own.

The challenge with someone like Carly is two-fold. First, it brings our bias and prejudice about autism into stark outline – we don’t believe that autistics are equal to non-autistic people. When we are shown a legitimate example of someone learning and overcoming their challenges so their voice is heard, we are amazed and awed by this wondrous achievement. It’s as though we didn’t believe the possibility existed that she was a whole person with her own thoughts.

On the flip-side we have another problem, and that is with people generalizing Carly’s achievements to anyone and everyone they know who is autistic. Just about everyone I know has been “Carly’d” at some point, which means that some friend or family member was compelled to share Carly’s story with them, because “maybe it will work for your child too”. (I did not make up this term.)

Carly has become our very own Lady of Lourdes. I fully expect to see her image on a piece of toast, or embedded in someone’s granite counter top.

While everyone has their own unique potential, not everyone will have the breakthrough that Carly did. The big truth about autism that no one wants to talk about is that sometimes people do have autism AND cognitive delays. Sometimes those delays are significant, and a person can grow into adulthood and still have the cognitive ability of a child. So while Carly achieved success using assistive technology, others may not.

In short, we are supposed to presume competence and equality, while not necessarily expecting miraculous outcomes.

And THIS is a major stumbling block in the autism world, and especially between advocates and parents. Those that are active autism advocates will undoubtedly have a cognitive level that is at least close to “average”, while many parents are advocating for children that are significantly below the average, and unable to advocate or comprehend advocacy efforts.

According to an article on, about 40% of children with autism also have an intellectual disability. That translates to roughly 4 out of 10 people with autism have some degree of cognitive impairment. Now compare that to a study by Left Brain Right Brain, that shows an incidence of intellectual disability in the general population to be about 1%. Based on these studies, it is clear that there is a higher likelihood and prevalence of intellectual disability among autistics.

Carly is a role model. And while she does serve as a wonderful example to many, she also serves as an impossible standard to at least 4 out of 10 autistics.

And for me, that begs the question, how does the autism community effectively represent and advocate for people that may never achieve a degree of independence? Are the goals of advocacy in alignment with the needs of the entire community?

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