Let's talk some more about cookies

Recently I have found myself (voluntarily) in the middle of cyber arguments taking place between autism parents and autistic self advocates. These discussions are always so full of emotion and pain, rarely does anybody come away from them with a good feeling.

I'm bothered by this. I really am. If you've read anything I've commented on recently and you've taken issue with things that I've said, this may come as a surprise to you, but the truth is that I don't like it. I don't like this divisiveness. I don't like that we're split into 2 separate groups. I don't like that we fight with each other; that we don't or can't understand each other.

I like to say that I have an over-developed sense of empathy; I'm not just really good at seeing the issues from all points of view, I sometimes trip myself up trying to explain things because I try to say things in a way that everybody will be okay with. That doesn't always work, I know, and often I'm having to backpedal my words. Oftentimes a lot of what I say ends up not making sense or I simply don't explain myself well enough, and when that happens I just quit the whole thing and I leave feeling frustrated. Good thing I have this blog, right??

I asked my sister-friend Dawn for help when I was writing this. I'm not a writer and I was having trouble with the words, and she's always been awesome about helping me with these things. She said "Maybe the 'problem' is that you are expressing YOUR feelings--which are neurotypical--in an autistic world. You will always be on the outside, no matter how hard you advocate, no matter how hard you empathize. It's like the role of the Jewish activists in the civil rights movement. As much as they wanted to help, it wasn’t REALLY about them, and they were never 100% accepted into the movement. And this stage of your growth--why the comments and arguments bug you-- is because you are beginning to understand that." I think she's right.

I am now 7+ years into this autism journey and I've come a long way in that time. That by no means makes me a veteran, but I'm through the beginning stages. I've done my grieving; yes, I grieved. I grieved, and I raged (oh yes. I raged), and I was filled with pure terror for weeks and months at a time. I had days of extreme "self pitying" lows, extreme "worrying about my kid" lows, extreme panic about the future, and all those goddamn what ifs and what ifs and what ifs again. Why did this happen? What did I do wrong? Is this my fault??? I ate tuna when I was pregnant. He got all of his shots. What should I have done differently? Why did this happen to him? To me?

But I'm past that now, and am firmly entrenched in acceptance, education, and support. When I come to these discussions, I do it not from my own place of emotion, but from remembering what that place was like, and being able to have a clear head and (attempt to) articulate what that feels like.

In the interest of full disclosure, my personal experience with autism, particularly the past 3-4 years, has not been all that difficult. My son is an absolute joy. We do not experience any of the behavioral issues that other parents face, at this point he has very few sensory issues that affect his daily life (I'm not talking about school, that's a whole other ball game) he is not rigid, he is not inflexible, he deals with change very easily. He's got tons of quirks and stims, and his expressive language skills cause him, and me, a great deal of difficulty and frustration, but that's okay; we deal with things as they come and we all love each other very much.

At the most I can be accused of worrying too much, which I completely accept. I know that he is very sensitive to my moods and I know that I worry too goddamn much. I know that I project my own fears about his happiness and well being onto him and that he doesn't care about these things nearly as much as I do. I also know that my overprotectiveness is not beneficial to his emotional well being, and I try hard to keep it to myself.

So, there's my full disclosure. Hopefully this will help people better understand where I'm coming from, because what I want is to create some productive discussion between us all. I want to fix this. I'm not nearly self centered enough to think that I and my itty bitty blog can actually change the public discourse, but I do think that I can offer a place where these discussions can happen, and so I'm going to try. There shouldn't be two different groups fighting each other: we should be one group, working together.

I keep going back to the guest post that Rachel Cohen-Rottenberg wrote for me a year ago, called We Are Not the Enemy. In it she says "I am not your enemy. I am your ally, and I am your child's ally. Now and always." So, I guess I'm writing this now to tell the autistic people who are reading this that I, too, am not your enemy. I am not afraid of autism; I do not hate autism, and I can help bridge the gap between our two groups. I want to learn from you, and I want to stand beside you as you fight for your rights. You are my child's future and I want to help you as you make the world a better place for yourselves; and for him.

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Occupy the DOE - 3/30-4/2, guest post from @thechalkface

So I met this dude on Twitter who calls himself The Chalkface, and he's been tweeting these links about an event that's happening this weekend in Washington DC involving teachers and testing and education reform. So, being the huge fan of teachers that I am, I asked him to tell me some more about this event, and also to explain to my readers why it is that we should even care about this. (I added most of these Wiki links after he sent me the article, fyi).

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I've been invited by Jill to inform readers here, and the special education community, about a little event coming up this weekend called Occupy the Department of Education in DC. This is primarily an educational event premised on an issue our group has been discussing for months: the problems with high-stakes standardized testing in public schools. Less an occupy in the sense of a presence or a nuisance, we are alternatively suggesting an occupation of the conversation on education reform. We feel that those that know the classroom and know students are not having their voices heard in this debate. Rather, legislators, software billionaires, and economists are the ones with the most influence on public education policy. Not teachers. Not parents, and definitely not students.

United Opt Out National, the group planning and "sponsoring" the event (and by sponsoring I mean our own dime), considers this to be a watershed moment for high stakes standardized testing. It has not improved educational outcomes over the last 12 years and state tests certainly have not eradicated the inequities in public education based on race, social class, or special needs. The data pushers failed in all of their illustrious promises a decade ago.

Race to the Top and now the new Common Core are both measures that actually double down on the testing regimes. All this talk of waivers and grant funding come with tremendously complicated strings attached that increase the pressures to succeed on tests. And in a tenuous budget climate, piles of cash are taken out of the classroom and dumped on more testing, whether it's bending to new national assessments and curricula, buying glossy new materials for those national mandates, or test booklets and security.

Educators and parents of children with special needs should especially be outraged at this moment. Now, I must confess: I've been a general elementary classroom teacher and now I'm a teacher educator at a public university. My expertise in special education is limited. But allow me to share one simple anecdote that might make your blood raise a couple of degrees. As we've seen with recent test cheating scandals, the stakes are higher than ever and the pressure to demonstrate annual gains on test scores is intense. It dominates the conversation in schools. I'm not condoning cheating, but I can understand it.

So, I've been privy to a lot of what general education teachers talk about in public elementary schools. The students that appear to receive the most attention right now, at least in tested grades, are those beloved "fence sitters." That is, the students who straddle the line between basic and proficient or failing and passing. Educators and administrators are sort of compelled, with being so strapped for time and resources, to both give up on students who are far below passing and to dismiss students who could use a challenge. Oh, I'm sorry you're finished early, you finished the odds, now do the evens.

Here's where it gets interested. Some are so desperate to meet adequate yearly progress, or some other such nonsense, that meetings are called to get those "fence sitters" labeled so they can receive accommodations, anything just to give them an edge. Force the issue, get an IEP or 504 or whatever for those kids so they can at least get extra time. And mind you, these aren't students who display any kind of learning issue other than your everyday variation or difference, nothing that would or should constitute a label.

So, what's the problem then with getting individual kids what they need to give them an edge on those tests? Isn't increasing those scores a point or two to passing beneficial to the student, the teacher, and the school? Well, it is definitely a problem for students with significant needs that require more intensive accommodations. Who's going to handle the increased caseload? Will there be extra funds? How will this affect the educational experiences for students with more significant needs, like students with autism? You see, with increased testing requirements, with additional formative assessments and benchmarks along with the customary state tests, staff is pulled constantly to sit with students, to read for them and scribe at the expense of the more important duty to actually teach. Forcing accommodations on students who don't really need them, in the interest of getting an extra point or two on the state test, starves a special education system and budget that is already limited in funding and resources. (emphasis added by Jill)

Adherence to a test-driven and data obsessed version of education reform has shown no signs of improving public education and does a tremendous disservice to students, teachers, and communities. The primary justification for No Child Left Behind a decade ago was to disaggregate the data so that schools and teachers can be held accountable for groups like special needs students who have been ignored. That might have actually been true in a lot of cases, with race and income level as well, but we are certainly worse off now post NCLB and will not show progress even under Race to the Top.

United Opt Out National, the group behind the Occupy the DOE event this week, is trying to use the issue of offering parents the choice to opt their children out of destructive testing mandates as an act of disobedience and desperation. Despite the evidence, the dismal results, and continued inequality in public schools, education leaders are doubling down on test-driven reforms and insuring teachers possess no political power to counter them. Rather than occupying a space, the Occupy the DOE event is educational in nature. It's meant to raise consciousness. On another level, if parents can't trust that sound decisions are being made with the data provided by their children, then officials don't need to have it. That's as simple as I can explain it.

Shaun Johnson is a teacher educator and former elementary teacher. He returns to his roots every summer, teaching 5th graders in a DC public charter school. Shaun earned his PhD in Curriculum and Instruction from Indiana University and researches and publishes about gender in education, social studies, and education reform. He also blogs At the Chalk Face.

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Theory of mind part 2

Here is Theory of mind part 1

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(Theory of mind is the ability to attribute mental states to oneself and others and to understand that others have beliefs, desires and intentions that are different from one's own.)

Wednesday morning I was in Starbucks, picking up my grande no whip mocha (an important detail, in case anybody wants to buy me a cup of coffee at some point) and in front of me in line was this chick named Sarah.

Sarah was on the phone, chattin' away. When it was her turn to place her order, she rambled it out to the barista and then went back to chattin' it up. The barista then had to say "do you want a bag? Ma'am? Ma'am? Ma'am? Do you want a bag? Do you want a bag?" while Sarah just kept on going. (It turned out she did want a bag. I got to the register and said "that must be really annoying to you." "I get paid by the hour," he said. Good answer).

Then Sarah and I both stood there at the little table at the end, waiting for our drinks. She continued her conversation, loudly. Occasionally she would SHRIEK with laughter. Did I mention she was loud?

The other people in the place exchanged some glances, and we all knew that we were all thinking "this chick is really fucking annoying." At one point, after a particularly loud shriek, Sarah says into the phone "I'm totally annoying all these people around me." So, not only was she apparently aware that she was really fucking annoying, she also just didn't give a shit. On and on she went, as the barista yelled and yelled "Sarah! I have your extra hot chai at the bar. Sarah! SARAH!!"

Finally... FINALLY... my drink came and I was able to leave, but then I walked behind her while she stumbled across the (red light) crosswalk and to her car, never even taking a breath.

Sarah was not autistic. But, hey. You know who lacks Theory of Mind? Autistic people.

Yep. True story.

For more (non-sarcastic) information about how autistic people lack Theory of Mind, but NT people totally don't, visit Autism and Empathy.

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Wordless Wednesday: It's okay, it's dry erase

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"Wow, they're really drunk over at checkout."

This weekend was our PTA's Silent Auction. It's a fancy schmancy event where people are supposed to dress nice, drink wine and spend too much money in front of their kids' friends parents. It's actually quite successful, in that respect. I'm told we made $31K this year; this was the 3rd one we've done and we do better and better every year.

When the event started 3 years ago, I was very involved in the planning and the coordinating, but as the years have gone by, I've been doing much less for the PTA, in general. I got a little burned out. Sometimes I don't even bother showing up for these things. This time, though, I was informed by the committee "we've signed you up to help at checkout." They don't even ask, they just put my name down on the list of people who will help do math related things at the end of the night. It's okay, though, I would have volunteered, anyway.

The thing about this event, though, is that the alcohol flows freely all night long. The idea (the very very successful idea) is that people will get drunk and make bad bidding choices and then spend too much money. It's a really good idea. A $31,000 idea, actually. My only responsibility these days, as part of the planning and organizing, is to procure the catering permit that will make the free alcohol legal. You're not allowed to sell alcohol at PTA events, you see; you can only give it away if somebody has donated it. But you do need a catering permit from the Alcoholic Beverage Control office in order to not have the police come.

By the way, here's the display case inside the Oakland Alcoholic Beverage Control office:

Somebody should "pin" this picture....

So, the night is a fancy event, and there are bars with bartenders (PTA dads) handing out the free wine, and you stand in line and chat with the other parents while you wait for it to be your turn to get more wine, and it's all very lovely and etc. .... but this year they had something new: Vodka. Yeah, there was this giant vat of vodka (and sugar and lime juice and ice) with a spigot at the bottom, so there was no waiting in line to get your wine glass refilled, you could just go up to this thing and put your vodka into the little red plastic cup like we used to drink out of in college. And they just kept filling and filling and filling it....  (Don't worry, I had a designated driver)

So, the end of the night comes and it's time for people to collect their winnings and pay, and guess whose job it is to take their money and show them where to get their stuff? Yeah. That would be me. And so I end up at the checkout table processing $31,000 worth of credit card transactions.... really really fucking drunk. 

The thing about going out amongst people and doing your drinking, as opposed to staying in the safety of your house with your husband and the computer, is that you wake up the next day not entirely sure if you've made a fool out of yourself or not; which was, in fact, the case for me on Sunday morning. But then I remembered that I wasn't the only one with a red plastic cup that night... and then I remembered the mom of one of Child 2's friend grabbing my arm and whispering "don't tell my husband how drunk I am," and hubs, of course, reminded me that drunk or sober, I kind of always act the fool (he's absolutely right; it's all in the name of comedy) and all of this made me feel better about whateverthehell I had gotten up to the night before.

And then comes Monday morning, at school, when I encountered another mom, who was supposed to have been at the checkout table with me. Apparently she had been in the bathroom the whole time. "I think I'm still drunk," she said. I told her that I had been in no condition to be taking people's money at that point, and if somebody complains to her about having been overcharged, it was totally my fault. "Yeah," she says. "Somebody came up to us at the pickup table and said "Wow, they're really drunk over at checkout."

The night ended with me paying hundreds for the stuff I had drunkenly made bad bidding choices on and then leaving without actually picking up any of it. They tell me they have my gift certificates and I can get them any time. Gift certificates for what, exactly? I have NO idea....

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"All Kids Do That" Part 16: Sensory Issues

See the tab above for more information about this series.

Today we have Sherilin who blogs at Laughing My Abs Off. Her daughter also has a blog, and she wrote about this, too, calling it The Year of Stupid Pants, complete with illustrations!

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All kids do that.... right? all kids hate certain clothes. i've had so many parents tell me how opinionated their kids were about their clothes, but i think they're not on the same page as my family is. for us, it's not about an opinion, it's about survival.

brooke can't stand to be rubbed or scratched by her clothes. squeezing is fine, but all tags must be cut out. there can be no decals or stitching that can be felt on the insides of shirts. because stitching equals death to her nerve endings.

if she has underwear on her body that rides up her butt cheek even the tiniest bit, she insists that it's a wedgie and she will jam her hand straight into her butt while squirming and shrieking and making the most hideous faces. it doesn't matter where we are or who's looking. i have to buy panties for her that cost $6 per pair and i consider it money well spent because finally she has something covering her butt that doesn't drive her insane and continually embarrass us.

we had two years where she couldn't wear jeans because they all touched her wrong. she could not bear the feeling of the thick, stiffness of jeans. she liked how they looked and wanted to wear them, but we went to store after store after store and tried on about a hundred pairs of jeans, each session ending in hysterical tears because they all felt wrong or gave her wedgies. i even tried altering some myself in hopes of something being satisfactory, but it didn't work. we did finally find a hand-me-down pair that she could wear and i was very, very sad when she outgrew them.

i tried to force her to wear certain things because i thought maybe it was just a matter of her trying to control her wardrobe. but the end result was a girl who was writhing and moaning and couldn't even walk properly because of the pain that her clothing was causing her.

i've given up. she's nine and i let her wear anything she wants to, even if it doesn't match or looks odd. she's not trying to make a fashion statement (usually) she's just trying to get through her days without being tortured by her clothes.

not all kids are like that.... right?

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"All Kids Do That" Part 15: No They Don't

See the tab above for more information about this series.

Today I'm happy to welcome Bobbi Sheahan. She wrote a book. She's a published author. And she's writing for ME. Sweeeet.

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Things That Take Years Off the End of Mom’s Life

You know that getting-to-know-you chat when moms meet each other and begin to exchange basic information about our kids? It’s a little different when your child has autism.

There's always a How-Much-To-Say dilemma: usually I am content to come off as Crazy Helicopter Mom until my child does something that frightens Our New Friends. Fortunately or unfortunately, that never takes long, and then there’s A Situation. If the word "autism" hasn't come up yet, it does at that point. I'll acknowledge that my child doesn’t have the caution that other kids have, or that she’s done some objectively zany things, or that she's a risk-taker, to a greater degree than the norm, and that's when the fun starts. The responses seem to fall into one of two categories: either our New Friend will run screaming into the night and I'll never see her again, or – surprisingly frequently – she’ll dismiss it with some version of All Kids Do That.

Example: My kid puts things in her mouth that aren’t food.
Response: All Kids Do That.
Light bulbs? Really? All kids eat light bulbs? How about thumbtacks? Sticks? Mulch? How about mulch? And mulch consumption before age 3 doesn’t count.

Or: My kid used to like to run away.
Response: Yeah, All Kids Do That.
For six and a half years? Without stopping?

Or: My kid took a while to potty train.
Forget the Q&A; just hold me while I weep. Maybe someday Jill will have me back to write an article called Potty Train Your Child in Ten Years or Less. Wait, we’re in danger of getting off topic. Let's get move on to dangers with electricity.

Or: My child doesn’t exercise caution around electrical appliances.
Response: Yeah, All Kids Do That.
No, really. She’s not a toddler anymore, and she has conquered a half-dozen floor lamps, tried innumerable times to toast her hands (yes, Toast. Her. Hands.), and once she grabbed a hot light bulb and burned the skin off her hand. Not the same light bulb that she bit into – this was a different light bulb, on a different day. But thanks for asking. Would you like some toast?

You get the picture. Our kids’ senses are often calibrated completely differently than the rest of the world’s senses. That can be maddening to your child – say, if he has very acute hearing or smell – but it can also be dangerous. Sensory issues can mess with your perception of pain, for example. My Sweet Baboo used to stand on anthills and watch the fire ants march up and down her legs, biting as they went.

Now, let’s be honest; before I had a kid with autism, I would have seen those welts on the child's legs and thought, “Dear God, what is wrong with that mother? How could she let that happen?” Well, I'll tell you. I successfully dragged her off of about 386 anthills that spring, and I missed a couple.

Then again, the next kid with autism might have just the opposite reaction, and might be tearing at his skin after it’s been brushed against a leaf; I’ve heard mothers tell me about how their kids basically scratched their skin off, too, for no apparent reason. My child has attempted to take the skin off of her arms with a potato peeler, but I have managed to stop her. About eighty times.

So, please, please don’t tell me All Kids Do That. Or stand back if you do. I might just have to come after you with a potato peeler and some fire ants.

Bobbi Sheahan is a big fan of this series, and she still can’t believe that Jillsmo asked her to contribute to it; she requests that one of you please pinch her. Bobbi and Kathy DeOrnellas, Ph.D. are the authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). Bobbi’s website is www.bobbisheahan.com. You can also connect with her on Twitter at @BobbiSheahan or on Facebook.

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It's okay to suck sometimes

I've been sucking lately. Sucking at blogging, that is. Probably some of you will disagree with me, but this post isn't mean to elicit sympathy so please don't disagree with me because you'll make me cranky. Moreso.

No, lately it's like I either have nothing in my head to get out, or I have lots of good stuff and I can't make it coherent. At least not without help (Yeah I'm talking to you) I've been re-posting stuff because I don't like being blank every day. (And because I'm kind of lame, really, when you think about it.) But I read back on these things that I've written months ago and I'm like "man, I used to be good at this. What the hell happened?"

Bu the truth is we can't all be good at shit all the time, can we? We can't always be eloquent. We can't always be insightful. We can't always even be coherent. We just are what we are, we're human, and we can't really get down on ourselves because of it, so I've decided to make this post (and turn off comments, because you're meant to read it and that's all) be a big party for all of us to allow ourselves to simply suck sometimes.

It's okay to suck sometimes. I've sucked before, and eventually I got better. And then I sucked again. It's the cycle of life, and being awesome is a part of that cycle, right alongside the sucking. So if you think you suck? It's okay. Me, too. But we'll get better.

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About Special Education

I originally wrote this about 2 years ago, within the first week that I started blogging, but nobody read a word I wrote back then, except for my husband, my mother, and 2 friends. How about a little exposure, right??

When Child 1 was in preschool and we were preparing for Kindergarten, I saw a post on a local mailing list written by a mom with a kid in Special Ed (SPED) asking what parents thought about the district's Inclusion Program, and worrying how other parents felt about it, etc. The majority of responses were positive, parents, in general, are able to appreciate the differentness in everybody and had good things to say about their experiences. Some responses were not so positive, though. Parents (nobody had the balls to sign their name, of course) said that SPED kids "stole" resources away from General Ed (GenEd) kids; in today's tough times, with budgets so tight, it "wasn't fair" that their kids were losing teacher time and resources because the district thought it was politically correct to put the SPED kids in the with the rest of them. Seriously. Someone said that.

So, Child 1, and myself, enter public elementary school knowing that people feel this way. (Okay, Child 1 doesn't know and even if he did he probably wouldn't care, it was just me that knew this) and at first I was afraid to even mention that he had a disability, but as the years have gone on I realize that there's a pretty good crew of folks at the school and I haven't much encountered that attitude.  PHEW!

However, here's what I've learned about SPED and GenEd resources at our district that I wish I could have told myself, and those jackass other parents from the mailing list 5 years ago.

- Our district was apparently the birth place of Special Education; there was once a fantastic program, designed by parents, teachers and administrators, that actually fully included SPED kids and provided them the support they needed to get them an education. Awesome!

- SPED is federally funded. Services are paid for by a separate budget within the district, money which comes from the federal government, authorized by the Individuals with Disabilities Education Act of 2004.

- Federal law (IDEA and NCLB) requires that districts adopt a "Response to Intervention" program which tries to identify kids who are struggling and get them extra help before they fall too far behind and instead of a referral to SPED. This is actually a good idea, don't you think? I think so. Not being sarcastic, I think that's really a good idea.

- The Department of Education has allowed school districts to use 15% of IDEA funding for early intervention services in regular education

Over time, though, our district has been moving away from the great inclusion program in favor of the RTI program which attempts to address the needs of all kids. They've been doing this, though, by taking already strapped SPED staff and basically just giving them extra work with extra kids. After all, they can use 15% of their IDEA budget to pay for their RTI, so why not just tack on some extra duties to the Resource staff already there? So what happened is that the Inclusion Coordinator became the Resource Coordinator, and while on paper the district said "you're 85% SPED and 15% GenEd" the reality is that she no longer has 30 or so kids with IEPs on her caseload, she now has every kid at the school on her caseload, about 400. Because every kid at the school is entitled to an "intervention" if they need it, or at least a referral, to the Resource Coordinator. (I'm not sure if that's her actual title, I don't remember)

My kid's disability manifests itself in the classroom by him sitting quietly, softly talking to himself, looking beautiful and doing an excellent job pretending to be paying attention, but not learning a single thing unless there's somebody standing over his shoulder the whole time. He has an aide (Federally funded!!) and there are a host of GenEd kids who are a huge disruption to the classroom. These kids don't have IEPs and I have no idea if they need one or not, but as they act out, the teacher, and my son's aide, are forced to turn their attention to those kids, while mine sits quietly, looking beautiful and not learning. Those GenEd kids, who don't have a 504 or an IEP, get referred to the Resource Coordinator as head of the Intervention team, because they're falling behind. Because the Resource Coordinator is now so strapped for time, I have a great deal of trouble even getting an IEP meeting scheduled. It's not her fault, she's doing the best she can, she just has way too much to do.

So, the bottom line, and I say this to the myself of five years ago, or anybody else who doesn't know any better, or anybody with a child in SPED entering a public school: At our district, it is actually the General Ed kids who steal resources and teacher time away from the Special Ed kids. In today's tough times, when budgets are so tight, it's really not fair that a federally funded program should be drained away by kids who don't qualify for it. Oh, yeah, that's right, I went there.

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Black and white is for cookies only

The blogosphere is a war zone, the players are autism parents vs. autistic adults, and you have to pick a side.

You can either believe that disabled people are burdens and tragedies or you can believe that disabled people are capable of living happy and fulfilling lives. You can acknowledge and accept the difficulties that autism parents live with every day or you can believe that struggling with autism means that you don't actually love your child. You can't mourn the tragic death of George Hodgins and feel sympathy for his mother at the same time; you just can't. This is a black and white battle and you need to choose which side you're on.

"You're not like my child. You can write. And have a job. And friends."

"You're abusing your child by giving him/her ABA."

"You're a fake autistic/a fraud/a poseur/the enemy of me and my child."

"Grieving because your child is autistic makes you selfish and is not okay."

I'm sorry, but that's fucking bullshit, and I refuse to participate in it. I will not pick a side, because none of this is black and white. There may be extremists on either side of any issue but as like most issues, the majority of us lie in the middle; in the grey area.

Here in the grey area, I know that my experience with autism isn't the same as your experience with autism, but that doesn't mean that my experience is less valid than yours, or that yours is less valid than mine. It just means they're different, and while I have not walked in your shoes, I can still be sympathetic to your feelings; and I expect the same from you in return.

That doesn't just apply to me, of course; that's for all of us. And of course this war didn't start recently, it's been waging for years; but until and unless we all... all of us.... come to terms with these facts, this war will never end. And what good is it doing for our kids? For the adults? For the adults that our kids will be some day?

My friend Rhiannon, who blogs at Unhandicapping the Disabled Life (and who is so much better with words than I am) says: "You can address those with disabilities as entities of value in and of themselves, and for themselves, or you can address them as if their value only exists as contextualized by the part they play in the lives and world of others around them. In either case, there is the issue of how you make those judgements. Do you judge a person, a life, and a place in the world only by its disadvantages, or only by its advantages? Do you judge things for what they are, or in contrast to what they might otherwise have been? Or, perhaps, can we be as realistic about the life of someone with disabilities as we can about any other life, and accept an honest dialogue that reflects the totality of the human experience. That is, after all, what everyone involved in this debate IS.... a human being. It doesn't matter if we're talking about a teacher, aid, therapist, doctor, parent, sibling, or anyone else in the support system (or lack thereof) that, directly or indirectly, is involved in the life of someone with Autism.... even that stranger in line at the store. The fact is, we're all human, and we're all in this together. Not for better OR worse, for better AND worse."

I added the emphasis on that last part because it perfectly sums up what I'm (lamely) trying to say. This "black and white war" does no good for anybody involved, and so I'm staying in the grey area. It's here that I get to both sympathize with my autism mom friends whose experiences have been so much harder than mine, and who tell me that it really is like a battlezone sometimes, and I can learn from my autistic friends who have made my life, and my son's life, so much better just for having known them. I'm lucky that I get both sides and if you're insisting on staying just on one, I feel sorry for you.

The world isn't black and white, and yours shouldn't be, either.

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"All Kids Do That" Part 14: Potty Training

See the tab above for more information about this series.

Okay, I got a little backed up/confused/befuddled about this series and my schedule and all that, but I'm pretty sure I've got things under control right now. If you have not received an email from me today, and you have sent me something for this, please contact me and let me know. After this post, I only have one more waiting in the wings, and all I have after that are promises of posts but no actual posts. I would really like somebody to write about sensory issues, stimming and obsessions, so somebody get me something please! (Also, if your name is Emily, and you are not related to me, just a reminder that you have made promises of a Guest Posting nature..... And if your name is Rachel, I can't remember if you've made promises or not, but I'm choosing to remember that you have.  I'm calling you girls out!!!)

Today I am happy to welcome Lisa, who blogs at Autism Wonderland. Hi Lisa!!!

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All Kids Do That: Potty Training
Lisa Quinones-Fontanez

I don’t know why they say it; things like, “oh that’s all kids…” with a wave of their hand, whenever I say something, almost anything about my six year old son, Norrin. When Norrin had trouble those first few days weeks months of kindergarten – oh, that’s all kids. When Norrin doesn’t want to sit down to eat a meal – oh, that’s all kids. When Norrin doesn’t sleep at night – oh, that’s all kids. And every year when I explain that Norrin doesn’t really understand the concept of Christmas – oh, that’s all kids.

Whenever anyone tells a special needs parent “all kids do that” – those four small words completely dismiss the diagnosis, the struggles of our day to day lives.

At least, that’s how I feel when I hear those words. Maybe they say it to make me feel normal. Maybe clumping our kids together makes understanding autism a little easier for them. Whatever the reason is, I know it’s not all kids. And when it comes to potty training – it certainly isn’t like all kids.

I started potty training when Norrin was two and half years old; the usual boy age to start. Whenever I talked about our potty training challenges with “typical” moms, they were all quick to tell me “all boys take a long time.” Then proceeded to tell me how it took them three weeks with their boy as opposed to the one week it took for their girl (or something crazy like that). And these moms offered suggestions, reward methods, books to read…but I knew none of these things would work for Norrin.

Well, it didn’t take three weeks to potty training Norrin. We’ve been training for the last three years.

Because what Norrin needed was time. He needed to understand the concept. He needed the motor planning to be able to pull down his pants (and/or to wipe backside). Norrin needed to strengthen his core so he could stand still and straight. Norrin needed to learn how to stop an activity and go to the bathroom – first with prompting and eventually without. Norrin needed the words to say “I have to go potty” or “I need help.” And he still needs help with fine motor skills like unbuttoning jeans and manipulating a zipper.

In order to get Norrin potty trained, we needed the assistance of an ABA therapist, several special education teachers and aides, speech and occupational therapists. We needed to use timers, visual aids, social stories and prompts. (Let’s not forget the wonders of Miralax!)

And along our potty training journey there were plenty of discarded underpants, stained carpets and wet floors. We went through bottles of detergent, tubs of disinfectant wipes and rolls of paper towels. And needless to say, the boxes and boxes of pull ups that we are still using. Yes – Norrin is potty trained during the day. Night time potty is a whole different story…

So instead of suggestions on what we should be doing, instead of dismissing the diagnosis by saying “that’s all kids,” take the time to listen and understand that in some ways our kids are different. Understand that because our kids are different, that our parenting needs to be different. And when it comes to stuff like potty training – what worked for your kid, may not necessarily work for a kid on the spectrum. Unless of course you used a book called “How to Potty Train in 10 Years or Less.” Because if you find that book, please be sure to pass that bad boy along.

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Dear Bitchy Mom at the Park Today

This is a repost; I originally wrote this about a year and a half ago. Still valid, though! :)

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Dear Bitchy Mom at the Park Today:

It seems that when you chose this particular location for your darling child's birthday festivities you did not completely think it through. You see, at public parks, on Saturday afternoons, on sunny days, there tend to be kids playing; and despite the fact that these children were not invited to your child's party, they are still, in fact, in the area.

We were able to figure out, pretty early on, that your child's name is Aidan (because, well, what child isn't named Aidan in Berkeley, right?) due to the fact that you had no problem having a loud, curse-filled discussion on your bluetooth headset, while facing the part of the park where we were (I guess so Aidan couldn't hear you? good thinking, you should protect him from that kind of language, I completely agree. We were also able to figure out that apparently it's inappropriate to RSVP for your child's party with just a text message, and such a faux pas should be punished in the harshest possible way). We then watched as the truck carrying the 25 foot bouncy castle arrived and men started setting it up. Being an adult, I easily surmised that my kid or his friend were not going to be sharing in these festivities so I started prepping them for this eventuality in advance. I mean, there's no social rule that says you have to let strange kids into your bouncy castle just because they're there; it's Aidan's party, after all. Being 5 year old kids, however, my son and his friend had some trouble with the concept and they still went over to investigate the scene. Perfectly understandable, right?

When you started yelling at my kid and his friend "HEY DON'T TOUCH THOSE BALLOONS, THEY'RE FOR DECORATION" I figured it was time for me to amble over and maybe do some damage control, if necessary. "She said we couldn't go in there," they told me, pointing to the enormous bouncy castle that contained about 10 kids having the time of their lives. "Remember how I said you guys weren't invited to this party?" I asked. "But Aidan said it was okay," they reported. Apparently they'd already had this discussion with your son who informed them it was perfectly fine with him if they went inside. Ahhh, to be young and innocent again, right? I thought quickly, though, and figured out the nicest and most child-friendly way to let them know that even though Aidan was cool, his mom was a control freak bitch who was never going to let some strange kids into her precious child's beautiful, perfect party. Don't worry, I was cool, they'll never know the truth about you. And when we left the park shortly afterward (we didn't really have a choice, did we?) I thought about poor Aidan, growing up with a mom like you. He may be cool now, but I'm sure you'll manage to somehow beat that out of him eventually.

In closing, next time please set the fucking thing up in your yard at home. I have a feeling you have the room for it.

Very truly yours,
Jill

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Hey, Girl.... #SNryangosling

I'm linking up again with Sunday's awesome Ryan Gosling Special Needs Parents Meme!!

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Poor kid is never getting his iPod back

I've been watching you guys talk about Draw Something on twitter for a while now, and I finally gave in and stole Child 1's iPod and installed it.

Oh, yeah. I see the appeal here.

For instance, here is my drawing of Bob Dylan, that Jim correctly guessed:

That says "Like a Rolling Stone," although I had originally tried to write "Don't Think Twice it's Alright," but I ran out of room and had to erase it and go for something shorter.

Want to play? I'm jillsmo and in case you decide to play me, I just want to tell you now: "I am so so sorry....."

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Some kind of Wednesday

You know, it's like Some Kind of Wonderful, except without the awesome John Hughes music. And with more despair. But fewer acid washed jeans.

I was originally going to make this a Wordless Wednesday, except I realized there were too many words I actually wanted to include, which would make the title completely useless, so I guess, instead, I'll call it Wordy Wednesday. Or Chatty Wednesday. Or I'm Over Explaining Things Again Wednesday. Or Shut The Fuck Up Already Wednesday.

Any of those will do.

This post is dedicated to Scott, who blogs at Dads Who Change Diapers, because on Tuesday morning when I was tweeting about how nauseous I felt because I was so goddamn tired, he was the first person to mention schadenfreude. He was also the only person to mention schadenfreude. And then he didn't judge me for probably spelling nauseous wrong, which I really appreciate. (Have you voted for him yet, in the whatever thing it is that he wants votes for? You totally should; it's really important.) Also because I told him I would dedicate this post to him, and then something again about schadenfreude. I don't know, I was really tired that morning.....

This is how my Monday night went, while hubs slept blissfully alone on the couch downstairs because he had to be up at 6:00am and he didn't want to bother me (you'll see the irony of that as you get to the end).

I took the blanket off of us by the 5th picture here so that you could see the body positioning we had going on, so just pretend the blanket is still there. Use your imagination, dammit.

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