Extremely disappointed

I know my husband and I exist in the minority of the autism/vaccine debate. I’ve said before that we tend to avoid talking to other families with kids on the spectrum, almost entirely because of this fact. Because we go against what appears to be the prevailing belief amongst other families like us, we sense a lot of hostility toward our beliefs.

We do not believe in a link between vaccines and autism. Yes, it is in particular because of our son, and what we observed in him. I was fortunate enough to be able to be at home with him, as I still am, and was with him 24/7. I’ve said before, and stand firm on it, I began to see signs that there was atypical development when he was as young as 6 months. Now that I have had the chance to closely observe several other babies on a regular basis, I’m even more convinced. My little guy, when he was a baby, was not chatty. He was, from the earliest, difficult to engage. I had to put on displays worthy of Cirque du Soleil to get him to look my way (note that I do not say ‘look at me’, because he never did). He laughed his head off when I’d jump out from behind a piece of furniture and shout “BOO!!!” His younger brother would fall over laughing if we made funny faces at him. I never recall my older son looking me in the eye, or at my face, even. Typical development shows three to four month olds starting to experiment with their voices, using this tool for something other than crying, even if it is only squawking and shrieking. Our older son did nothing of the kind, nor did he babble later on.

Probably a lot of folks out there will disagree with me, but I have long believed that, if parentswere really  honest with themselves about their child, and spent some time around “neuro-typical” infants for long enough, they’d remember what we’ve always known. I don’t want to play the blame game here, but I really think that even day care centers MUST have some kind of standardized checklist or daily diary for each child in their care. Otherwise, parents who find that they must both work miss out on some of the earliest signs of autism. Yes, I know, day care facilities often are maxed out to whatever state or local laws allow them for child to caregiver ratio. But they notice things, and if something pops up, it takes no time to make a note in a daily log. All caregivers should be really conversant in the signs of autism. They should also be conversant to the point of expertise in what “typical” infant behaviors look like. Every expert, regardless of their beliefs in origin, all say that the earlier a child is given diagnosis and intervention, the better the lifetime prognosis. Parents have to try their best to be on top of it too, and ask questions frequently.

I met a woman who had a two year-old boy, she was trying to have him play in a mall playscape. He was non-verbal, and had only begun to walk a short time before. Want to know why? Because his daycare, instead of alerting the parents, valued the paycheck over the child, and kept him in a high chair all day long. I am not joking. His “behavioral” issues were great enough that they confined him, rather than say to the mom, “You know, there are some things we’ve noticed.” It makes me sick.

Granted, no parent wants to hear that there is something “wrong” with his or her child. I often read and hear about parents who felt as though their world was shattered, that they’d been kicked in the gut, or that life as they knew it was over. I don’t think it’s helpful to view autism this way, and that’s why I advocate that it’s the child that matters, not a cure, not a cause, nor placing blame on anyone. We as parents desperately want not to hear that it’s “our fault”. Even if that does turn out to be the case, who cares? Is it truly as bad as hearing that your child will be born with a genetic defect so tremendous that the child will only survive a few months? Is it as bad as finding out your child has muscular dystrophy, cancer, or has been killed in an accident?

This might sound harsh, but we’ve got to quit wallowing, and get on with living. Our kids are our kids, and the autism is a part of who they are. Our son is not a diseased child, nor was he “stolen” from us. He is a complex, intelligent, humorous, moody child. He’s like most other kids, except that he doesn’t speak fluently yet. I have hope, beyond the stars, though. Just this morning, he threw one of my own phrases back at me, in a completely appropriate manner. His dad and I were talking over his tv show, and he looked right at me and said, “Oh, come on!” I attribute this entirely to interventions, and ABA.

He is who he is, and we love him because of it.

two steps forward, one step sideways….

There is a certain phenomena that most of us parents of kids on the spectrum are familiar with. It’s the progression/regression dance. We see our kids do this over and over again. By the time your child reaches our son’s age, you may even be expecting it. Our Macaroon is turning seven in just a week or so, and he’s been doing it for as long as I can remember.

When he was a baby, before I paid attention to my concerns, it was a handy thing that he forgot things like, how to break into cabinets, or what was in a drawer, or that I stashed treats in certain spots. It was worrying too, obviously, as I really found when I couldn’t teach him body parts, or how to hold a spoon, or the worst, when he said “mama” one time, then never again.

Once he hit school age, I could really see the pattern emerge, though. I’m not talking about just the casual school environment that he was in during his first preschool year. It wasn’t until he was in a real one to one situation. We’d see him gain skills, and then plateau for ages. We were baffled about that, until he’d suddenly fall off, and start showing behaviors he’d progressed beyond. For him it’s things like potty accidents, chewing on everything, grinding his teeth, and weeping over everything. And then, after we’d start despairing, and asking what in the world was going on at school, he’d shoot forward again with progress.

By now, we’ve come to expect it. We have handfuls of chewy tubes onhand for when his chewing/grinding fits strike, and make sure we tell him to go to the bathroom about every half hour. Sometimes new things crop up, or ancient habits resurface, like his old penchant for eating books or magazines. I try really hard not to react too much to it by now. I just remove the offending item, tell him that it’s a no-no, and redirect him with something new, and preferably, indestructable.

Other parents report another phenomenon we witnessed during one year. During this one year, Macaroon would spike these inexplicable fevers, invariably resulting in him getting sent home for the required 48 hours. I’m talking like 103 degrees, with no other symptoms. Zero. Nothing to help pinpoint the source of whatever was going on. However, these instances were invariably followed by a sudden spike in him evidencing new skills or learning. After these fevers, for instance, were the first moments he showed us how high he could count (nearly to 100), that he knew all his colors, all his letters, and that he could sight read certain things. Then, just as strangely, the fevers ceased. We haven’t had a single reoccurrence in two years now, and I do have moments of regret about that, despite how disruptive to routine it is to have to go retrieve a child from school at unexpected moments.

In all, these filips to the learning curve for a chlid on the spectrum ought to be viewed as “things beyond the parent’s control.” It isn’t easy, but if you sit back, or keep a datebook (or journal) of the child’s typical and atypical behaviors, you may realize what we did: we can’t beat ourselves up for this stuff. The human brain is so little understood. We hear it all the time, that we’ve barely scratched the surface of the brain’s workings and potential. For the autistic brain, we only know for certain that some particular pathways are missing that exist in other (so-called “neurotypical”) brains. I’m betting that the autistic brain has a multitude of pathways that the NT brains do NOT have. We have not begun to understand the differences, and, I think, it’s safe to say that it’s not as important as trying to understand our kids as they are, and to help them understand us as we are.

As my son gets older, and can read and write on his own, I hope to get him to track his own state of being every day in a journal, and perhaps his perceptions of the people around him. And if the rest of the family logs their own emotions, wellbeing, and so forth, we can compare things now and then. That, to me, will be a pretty useful tool.

For now, and for those out there who don’t know what’s going on with their kids, I hope that parents and families can take this advice to take it all with a grain of salt and dash of patience. Every squall passes,  and sometimes, the storm simply washes everything clean. Patience and persistent love. After all, my Macaroon started coming to me to have me kiss his boo-boo’s, just out of the blue one day, and still does it, on his own, because it seems to be something that he has learned to love and need.

Parenting is an extreme sport….

Things are pretty good right now with our Macaroon, who is approaching his seventh birthday. He’s finally potty-trained, is becoming more and more self-sufficient, and his verbal skills are expanding (finally as well!!!). Most moms and dads with kids on the spectrum long for having a household that is at peace with itself. Ours was hard-won, but as I’ve told some people, I was doing things that were helping my Macaroon, before we had a diagnosis, things I didn’t even know would play out the way they have. And never would have dreamt of, while cleaning gallons of milk and juice from our couch, rugs, and his bed, or watching him toss everything he could off our second-storey deck.

Our son is probably the only kid, as far into the spectrum as he is, that I’ve met who doesn’t sleep with meds, or wander the house all night. You may find this a little hard to believe, but he goes to bed between 7:30 to 8:00pm, and sleeps all night, until 6am, most days. He has an occasional morning of waking earlier, but as long as we get him to potty right up until the moment head hits pillow, he’s pretty good about that 6am mark.
Honestly, it just started off with me feeling pretty adamant that I wanted that “apres-child” time. I realized when he was first able to stand on his own, hang onto the crib rails, and bounce his ever-lovin’ brains out for hours, that I was going to have to figure something out. It took about a year of on-again/off-again interventions (that I didn’t know were interventions) to get him where he is now. It started off as just massage, which most babies like anyway, but he quickly began letting me know where he needed it. The best spots that I found were: gentle rubbing between the eyes, tapping/drumming fingers across the forehead and sinus areas, and scalp pressure. He also loves having his thighs, calves, and feet getting the deep pressure, as well as when I roll his fingers gently between mine. The first and last that I have mentioned go back to articles I read long ago about relaxation points. The rest are spots that he has shown me through the years, through that nightly ritual of helping him get to sleep.
Our environment was also important. We have low lighting for evening; leaving on enough lights to see what we’re doing, but we turn off everything else. We close the curtains, get beds and rooms ready, and do other little cues that it’s getting close to bedtime. We start that anywhere from 6:30 to 7pm, usually about an hour away from our target time. We end any active play, or other high stim activities, and usually cluster together in one place.
Last night, I let them watch Cars for a while on the couch, but “tricked” the kids into sleeping by bringing out favorite blankies and their pillows. Macaroon was passed out by 7:30. And honestly, now that he’s verbal, he lets us know on many nights that he wants his bed or to go “ni-night”.
It was not an easy place to get to, and I did set aside my desire to do things on many nights, because I had this gut feeling that, if I laid the groundwork, he would fall into the ritual. I think that it’s probably easier for younger kids, but it’s entirely possible that it may work for older ones as well. Our bedtime rituals are not set in stone, but we have no trouble going away from home, camping, or staying in hotels. He sleeps anywhere.

That’s one example of an end-result that looks pretty clear cut and simple to an observer. Some neighbors and friends of ours have trouble with their typical toddler; he is just in a pattern of not wanting to go to bed easily. By now, he knows he’s got his parents over a barrel, and he’s not giving up that power. His mom was over one evening about a year ago, and watched in disbelief as both of our kids announced their desire to go to bed. And go they did, without a fuss, and slept through us chatting and laughing in the next room (we have a small living area). Neither one got up until the next morning. She was jealous, by her own admission, and it’s hard for me to express what we did with our kids, without sounding like a know-it-all. Worse, because it looks so easy now, people think we’ve had it easy the whole time. No way.

Two years ago at this time, Macaroon was waking in the middle of the night, for reasons I have never fully understood. My best guess is that his paraprofessional was suddenly reassigned, and all the paras went on a rotation schedule. Macaroon was coming awake, and just screaming this primal, grief-imbued, gut-wrenching scream. I was terrified that things were coming to a halt. And he was nearly impossible to comfort. I had no idea what to do, other than to get in bed with him, and try to see him through it. And then it stopped. He has also had so many times of wetting the bed that I could not even venture a guess. I’ve had to change sheets twice in a night. Now, he gets up and goes on his own, but then, he’d sooner stay there and lie in a wet mess than get up. I don’t know for sure, but I think it’s because we have a pretty good light source near the bathroom, leave the seat & cover up, and started just directing him verbally to go, rather than racing down to get him out of bed. We can now finally sleep in a little on the weekends, knowing that he’s going to take care of that on his own. And then turn on the computer, and every t.v. we have, and leave the fridge open, and maybe try to make himself some food or drink. Yikes. We only sleep in until 7 anyway.

It’s navel-gazing, really it is, however necessary the reflection is. We have spent so much time trying to disentangle the mysteries of our older son. Not that the younger has been much easier; he was colicky for ages, has raging, uncontrollable tantrums, never wants to eat, has sleep hysterias, refuses to potty-train, and is the most stubborn person I have ever known (aside from a few relatives). He’s also sweet, has an eidetic memory, loves heavy metal, and is extremely polite when he knows it matters.

We exhaust much of our mental energies on our kids, no matter who we are. It’s just that not all of us find ourselves in a vacuum, completely cut off from the rest of humanity. For us, it’s been a measure of self-isolation. My husband prefers to be around few people, excepting the friends we have nearby. I would definitely prefer to be around more people, but have lost a lot of confidence and social skills since going into isolation. I find myself babbling wildly to my mother when we get together, because it’s my only other adult conversation in a day, besides my husband (and I think that’s typical for at-home parents). I also find myself feeling terrified of phoning people, or of taking any kind of social risk, unless it’s with folks I know very well.

Many of us parenting on the spectrum have read that little ditty that alludes autism to thinking that one is fully prepared for taking a trip to Italy, and then find ourselves in Amsterdam instead. You know, throw away your guidebooks, your Italian/English phrasebook, and what the hell is Dutch cuisine like anyway? Sure, autism can be like that. I think it’s like that even with our younger son. I surely didn’t expect a c-section with an 11lb baby, nor his insanity-provoking colic. We manage, the way that we manage in war, because humans are so utterly malleable in our behaviors. Where dogs and cats still operate on quite a lot of primitive instinct, humans can overcome instinct with very little training. I mean, really, I was told that my son was autistic, and remember only thinking, “Ok, what next?” Maybe it had helped that I was in the military for a little while, I don’t know, but I think we’re all capable of rolling with the punches when it matters.

I also think we can, most of us, gut it out and do the really hard work, knowing that it’s going to have a good result in the end. Like digging a septic pit in a third world country, you may have a little unpleasantness, come out dirty, and need tetanus shots, BUT, you’ve improved an otherwise untenable living situation. The two struggles inevitably are: not giving up, and not taking your kids’ anger personally. There is light at the end of the tunnel. And you find, as I have, that the only real price is having to relearn how to be a social creature. Don’t give up. Your kids wil thank you, whether they know it or not.

On a different note:
<<If you are a friend to someone who is parenting a child on the spectrum, stay that way, even when it seems like that person is hiding from you. If you just know a family who has a child on the spectrum, give them a pat on the back for doing the hard work they do. Moms and Dads like us don’t like to ask for help, don’t look for sympathy, and already get too much advice or criticisms from perfect strangers. We just need support and for others to make the first move, sometimes.>>

Courage, in what form and of what function?

My friend Susan over at www.litpark.com did an interview with Jordan Rosenfeld at www.writefree.us (if you’re a writer, or interested in writing, you can sign up for free to see their newsletter with the interview in full). She was asked all sorts of questions about creativity, her process, how she juggles her writing life with her family life; the one that struck me the most was the one asked regarding Writefree’s monthly theme of “courage”. Courage means so many different things in our lives; through every layer we unearth, we find it takes courage to face into it and to keep struggling.

When I was a kid, courage for me was defined in imagery. The guy standing in front of the tank in Tianamen Square. The people ripping down the Berlin Wall. Mother Teresa and Mohandas Ghandi. My parents encouraged us to delve into images of courage, but I don’t think I ever really explored it in myself. I had an admiration for it, but no real understanding of it.

I was a bullied child from elementary school on, bullied by other kids, but especially by teachers. I was a daydreamer, a drifter; I had many teachers through the years who would embarrass me in front of the class over homework and inattentiveness. Who could blame my peers for following suit? My memory of myself in the 5th grade, for instance, is of a nine year old, nearing five feet tall (I was the tallest girl in school), with size 9 women’s feet. I was terribly ill-at-ease with myself. I also thought of myself as a failure at everything. I’d had to give up on ballet at the insistence of my doctor, because of tendonitis (he also told me I’d never be able to be a runner). I’d also dropped out of swimming, flute, and lots of other things.

Moving on to middle school, the harassment worsened (I have come to feel that the town I lived in had a culture for teachers that enabled this adult bullying). I can remember getting egged by some boys from school, and when I told the principal about it the next day, he blamed it on me. By the time high school came around, I was depressed and desperate to have something better. I left my town on the auspices of a special program, and attended school one town away. At first, it got a lot worse, and I finally tried to run away from home, rather than deal with being so scared and lonely anymore. After that incident, the then-assistant principal brought me in to talk to him, and gave me my first look at personal courage. He told me that it was the job of the administration to have its students be safe, that he wanted me to feel safe; I just had to come to him and trust him to help me when I needed it.

Empowerment is one of those funny little things; when someone gives it freely, you find you don’t need it anymore.

My high school career wasn’t perfect, but after that, I wasn’t afraid anymore. And by the time I hit junior year, I found the guts to disobey my doctor, and chose to join the track team. Incidentally, I lettered during my second meet. I wasn’t filled with joy all the time, but I could at least live with who I was: nearly six feet tall, 120lbs., with feet finally at size 12. I was at peace with being gawky and weird.

After I got my degree in Classical Archaeology (and boy did that take guts – six semesters’ worth of Latin!), I went to officer candidate school for the Marine Corps. The Corps has its own distinct view of courage, in two distinctly different ways. The first is, of course, physical courage. No branch of the military could contemplate a world where its members aren’t required to occasionally jump on a grenade or eject out of a burning plane. During training, you’re expected to do various activities that highlight this, like scaling heights, crossing a three rope bridge, or doing night navigation. Physical courage is obvious. And it’s easy not to have it, and be unwilling to face into it. I’m not afraid to admit, however, that I avoid kayaking because it freaks me out, and that I run up the stairs at night, just in case something reaches through to grab my leg.

The other courage that the Corps talks about is the moral kind. They say that it’s doing the right thing even when nobody is looking. But it goes so much deeper than that. It’s got a lot to do with speaking up when things aren’t right. And facing into someone’s wrath when you’ve screwed up. My husband is an expert at the second. I mean, we all screw up multiples of times in our lives, but his philosophy is this; admit you’re wrong, really admit it (his favorite line is, “Yep, I really f*&#ed that up”), and then, give a genuine resonse to it. I will do better in the future. I am sorry that this happened. His take on this, naturally, was also shaped by the Corps, where we met each other, but also by his own childhood. We both strive to avoid giving excuses; it only clutters the apology with insincerity. Being able to offer something simple, in his words, gives the other guy nowhere to go. Imagine it. Your boss comes in screaming about something you fouled up. He or she is ready to tear you a new one, until you look him or her in the eyes and say, “You’re right. That is fouled up, I will fix it right now, and it won’t happen again.” Boom. Unpleasantness over. We all go back to our lives, fix our error, and it’s like it never happened.

I find that it’s liberating, but man, it has taken me a long time to get there. My father had something of a need for full explanations. It was not acceptable to him to hear something that bare-boned. He believed we were blowing him off if we did it.

I find Susan’s take on her writing process and her ideas about courage so interesting because she has dealt with the kind of writing despair that I have been struggling with. For me, it’s much harder to sit down and get the ideas out of my head than it is to fall asleep on the couch every night, totally exhausted by life. The last time I was able to sit and write at any length was when my older son was two, my husband was working in Virginia (while we remained in Connecticut), and I could sit with a laptop in bed, hammering away until the wee hours of the morning. I have no idea where that person has gone to, where my brain has fizzled out…it’s frustrating! It builds on itself, because it takes guts to open that vein and be honest in text. And we’re never terribly honest, even when we’re trying to be.

At this point in my life, in our life, I suppose it just takes courage not to be ground down into nothingness. I can summon the guts to go out at 5 a.m. to run, in spite of no street lights (I was really freaked out by the flashlight in the woods a week or two ago, though) on a state forest road. Courage keeps me from submitting to the kind of depression I used to let in back during my teenage years and early 20’s. What I can say for sure is that I have the guts to be an advocate for both my kids. I’ve had to take plenty of stands on issues for our older son, the Macaroon, because he hasn’t been able to talk for himself yet. And I am pretty sure that I will have to be on deck for the younger one, the Brownie, because he reminds me of me. And, of course, it takes plenty of guts not to lose your mind as a parent, when your kids are doing their level best to pry it loose from your grip. It’s both funny and exasperating when the Brownie responds to me asking him why he just lied to me about something he obviously did, and his response is, “But, I’m NOT a lion!!!”

The holidays and what works

My kids are both winter babies, and I forget during the summers just how hard it is to think of what to tell other people to get my autistic son for gifts. Around October, I start scouring, thinking back over the year’s events, asking his teachers, anything to think of what to get him. Every autistic child is different, though, and then, there is the pitfall of getting something that feeds too much into their rigid interests, and you don’t see their faces for weeks at a time. If we, for instance, let our son have a computer in his room, he’d probably disappear for ages. We let him have a tv and dvd player in there, and to that, he can connect his Clickstart (by Leapfrog) to the little tv, and play games, while being harassed by his little brother. The Clickstart was last year’s big gift from my parents, while we got him an art easel.

This year, I went with Poingo, which is like Leapfrog’s Tag system, only it was twenty bucks cheaper at BJ’s Warehouse, and came with two Disney books, while the separate books are half as much as the Tag’s books. My son is devouring sight words right now, and is making big leaps in his verbal communication as well, so we feel that this will be a good fit for him.  He’ll probably also want to play with his brother when we bring out the little guy’s gift of a Vsmile, since he likes playing Veggietales on the family Playstation. I’m being cheaper this year, see, since our kids are still young, I didn’t mind buying a gently used Vsmile from someone at a tag sale, which for $25, he’d thrown in about five games and a dance pad as well. That was a steal. If you are looking to be on the cheap as well this year, visit www.ouac.com (this is Once Upon a Child consignment – they appear to have locations all over the country, as well as in Canada), where they typically have tons of Leap Frog items, Melissa & Doug, and tons of cheap books, as I noted in an earlier blog.

I also, like a masochist, put drums on his wishlist, since he has consistently picked drums in music class at school since he started going. He also runs over to the drum set at our local grocery store (why this place is selling a drum set, I’ll never know) and tries to beat it into submission before I manage to get the sticks out of his hands. BJ’s has both drums and guitar in child sizes right now, for a reasonable cost; I would guess that Costco & Sam’s would as well (ask a friend with a membership to take you, or whether you can get a free pass for a day – I have one or two I’d be happy to share for BJ’s).

On his amazon list, which I update every time I have a flash of genius/inspiration, I have put on simple board games, making sure that they have very clear rules, and not much room for confusion. I also have most of David Macauley’s books on his list. I first came across Macauley as an archaeology student, with his book Motel of the Mysteries, a tongue-in-cheek look at the assumptions often made by archaeologists and historians. Macauley typically produces intricately drawn books that involve topics of architecture, nature, and the human body (he’s got a few about The Way We Work, with internal views of the human body, perhaps good for the older child with a lot more questions than you can answer).

For cause and effect, there are the type of toys that evoke Rube Goldberg, like The Learning Journey’s Marble Mania, or K’Nex’s rollercoaster builder. I’m hoping that someone will get him one of these, otherwise I may do it for his birthday, because this will also be a toy that will take him working WITH someone else to achieve a result.

We also love Melissa & Doug toys. I have donated them to the classroom as gifts, rather than handing some “thing” to a teacher (there are just too many of them in his life to do individual gifts). We got the magnetic calendar last year, and have a stash of the pattern/stacking/word building toys that he uses when they come for summer programming. The great part about Melissa & Doug is that the pieces are almost always chunky and large enough that it’s safe to have them out with multiple age groups.

Stocking stuffers:

If you need a break from your child chewing on everything in sight, visit this store at ebay.com: http://stores.ebay.com/THE (The Sensory University) for discounted prices on chewey tubes of all varieties. We get them 4 for 24.99 from there, with free shipping. Through his school, we were paying ten dollars a piece. My son is just as happy to see these in his stocking as anything else.

At your local party store, there is always an ample supply of squishy balls, light up toys, whistles, bubble makers, and anything else that can be used as a reinforcer.

Flash cards – it has taken me years to finally understand how to use these well. I look for them at places like odd/job lot stores, Marshalls, Barnes & Noble, and the Christmas Tree shops. Look for ones that are either photographic, or very clear drawings. If you don’t see what you like, get card stock at a craft store, and print them out the way I do: I go online, find specific photos of things he knows (or take my own pics), and refit the msword page size to match the cardstock, then fit the picture to a size you like. If you’re trying to familiarize your child with an item, first in groups of four cards laid out, ask him/her to touch the picture, and correct when the guess is wrong. Once that’s mastered, print out lists of the actual word labels, laminate them, and have the child match the word to the picture by placing it on top of the picture. Easy, right? Amazingly, this never occurred to me; I had to beg someone to show me how to use them.

A magazine subscription. It can be like National Geographic, to look at and learn from, or like Nick Jr., National Geo. Jr., or Ranger Rick, to first look at, and then cut apart, or donate to your child’s school.

Wiki or wax sticks, or pipe cleaners for letter forming, or fidgeting.

What doesn’t do so well:

When a toy or item becomes an obsessive interest. I know an adolescent who got a book of rock album covers for a gift, and he was stimming over them, because he was starting to hit puberty, and was seeing pictures of semi-clothed people. The book had to be taken away eventually, because he wasn’t able to bring himself down off of this excitement. The moral? Read through your purchases, and screen movies on amazon to be sure of what you’re getting into.

The parent factor:

Sometimes, we think we’re just getting our kids what they like. Maps, for the geographically inclined child, or a keyboard for the musical one. I’m not saying that this is a universally bad idea, but it’s up to you as a caregiver to monitor whether it works or not. We’ve had to shelve or permanently take away toys that have frustrated our son (or in one case, where the fighting over the toy threatened to get violent). We also have to put timers on for other activities. In the end, it’s our job to be the bad guy once in a while. And, if your toy/gift idea turns out to be a dud, trek over to that Once Upon a Child, and consign it.

Other ideas that I think are neat:

Instead of another toy to take up room, a trip to a favorite place, whether it’s a museum, or something similar.

Keep an eye out for an event like this one, in Simbsbury CT, where a movie theater manager is having an ASD friendly showing of Madagascar 2 (lights will stay up, volume down, outside snacks allowed, playing and talking, and otherwise being who they are is allowed. I’m thinking about going with our boys, but if you don’t have an event like it yet, ask me for event info, so you can try to get one in your area.

Webkinz or robopets: these pretend animals can help a child explore the needs of a living creature, especially if you’re contemplating a real pet.

BJ’s has a section on their site in indoor toys for ”differently abled” items. They have quite a selection of vestibular and expressive toys. Toys R Us also has a massive compilation of toys for different needs, which was brought about through the auspices of folks like Maria Shriver.

Little Tykes or Fisher Price digital cameras or video cameras – if you really want to see the world as they do.

A puppet theater with puppets – but expect to carry this one yourself at first. Practice your crazy voices, but also demonstrate interactions between people that can be confusing (after all, this is what the Muppets do).

sites we like:
www.onestepahead.com
www.hearthsong.com
www.eslflashcards.com
www.abcteach.com
www.etsy.com
www.widdlykinks.com
www.cricketmag.com
www.kidsdiscover.com

sites my son likes:
www.sproutonline.com
www.starfall.com
www.sesamestreet.org
www.playhousedisney.com

Have you met IAN?

IAN is the Interactive Autism Network. It’s a data-gathering survey system, which asks parents or individuals with autism to provide as much statistical data as possible. You’re asked to give info all sorts of topics – in return, you get to be part of a surging community, where you can see what other families have done, what is scientifically valid, what has yet to be proven (or in my opinion, will never be proven). You also get invites to studies in your geographic area, and first looks at data-driven articles. The most recent one concerns diet interventions, specifically, what I have long suspected, that it is going to be difficult to enact a large Randomized Control study for dietary studies, but that it’s on the agenda for resolution.

The main page is www.ianproject.org  – yes, it’s supported by Autism Speaks. If you’re an autistic adult, please don’t let that put you off. Most of us parents don’t see our kids as a puzzle – it’s autism that we’re slowly putting the pieces together for, wanting to see our kids happy, see them live their lives to the fullest. It’s going to take lots of cooperation, and in the case of the IAN project, long hours of boring questionairre fulfillment on www.ianresearch.org . My critique of how IAN operates right now is this: it moves incredibly slowly. There is one question per frame. Most commercially driven survery sites contain a few at once, but additionally, they zip along at a high speed, because, frankly, our attention spans are short. For the IAN thing, these folks probably need to remember that we’re many of us overtired, strung out, and have not tons of free time.

Once you start the process, telling yourself all the while that it’s going to help everyone in the long run, you may fall asleep, but reawaken, and then take a break in www.iancommunity.org, where you can see all of the reports from the past few years, see height/weight data (comparing not only kids on the spectrum to their “NT” siblings, but more specifically between different types of ASD’s; ex.-  kids with an Autism or Asperger’s diagnosis appear to be taller both than unaffected siblings and kids with PDD/NOS), join the forums, but mostly see science in action.

Regardless of how you feel, or what you think about your family’s experience with autism, you should go and participate.

The luxury of choice

Ah, we are a free society. Breath that fresh air. Or maybe just pretend to. I was having a little trouble with the literal version of that this morning on my run. The downside of the oil price issue for many around here has turned into everyone running for wood stoves again. So, while the homey scent wafts through the air, I find myself having trouble getting through a 3 mile run. I blame this on the greedy jerks who are charging too much for cleaner burning stoves. Wink, wink.

But I’m also kind of a wimp in this. I imagine that, in China and other sudden-boom nations, people are choking on foul air that barely qualifies as such. I should just suck it up…I guess, and be thankful that I didn’t roll the karmic dice to end up being born in one of those places. We, in this nation, have the luxury of complaining, sometimes loudly and violently, when things are wrong. In China, you protest silently, while standing in front of a tank. Praying that there is a human being driving it, and not an automaton.

I’ve gotten used to being a ecologically-minded person. Our family recycles everything that is possible to recycle here in our town. Every plastic that has the symbol, every scrap of foil, metal, and paper. And a month or so ago, I took another step, by buying red worms to eat the crap we toss out. My garbage disposal is breathing a sigh of relief as I write. I got them from angoraandworms.com, a home business run by two nice ladies in Charleston, RI. It took a few weeks for the food to start getting digested, but now, with a scrap can safely containing what they haven’t eaten yet, we are fully into this.

I have divested myself of almost all “bad” cleaning products (I would just like to know what to disinfect with when the stomach flu comes to town!). I use cloth towels and rags to clean with. We eat organic when we can. We buy locally when we can. For a lot of people, that’s just called everyday life; eating what is right there, using what’s right there, because there is no other option. For us, capitalism first removed our choice in the matter, and then, remarketed it to us. We’re paying through the nose for what our grandparents just accepted as this everyday existence.

On the other hand, our mighty weapons of the dollar, free speech, and the internet have enabled us to take action in ways heretofore undreamed of. Sometimes, fact doesn’t even need to apply, but it’s really effective when it does. Right now, in our current digital age, we have come to believe that we are more contaminated by industrial toxins and chemicals than one hundred years ago. As an archaeologist, I really find that hard to swallow. As someone who watches the evening news, and follows global ecology, I know it’s a bit exaggerated. We are certainly better off than anyone who was working in factories during the industrial revolution (remember the Mad Hatter from Alice in Wonderland? It was a real syndrome; the result of hatmaking or milinery going industrial. Mercury was used in copious amounts, resulting in neurological defects.). We are better off now that medicine and drug manufacturing has some means of being regulated. It used to be that any old quack could hand out arsenic, cocaine, mercury, or laudanum, amongst other things. Women have used arsenic since the days of ancient Rome to whiten their skin. During the 19th century, it was used to embalm, and since we are a dumb species, there were cases of arsenic groundwater contamination as a result. Men actually used to take arsenic as a male enhancement drug. Mercury was used in the Lewis & Clark expedition as a dysentery remedy.

Coal burning in the British Isles has been around since the 13th century or so, when it was so plentiful that it could apparently be carted away, without mining, from its shores. Well, in short, we are our own worst enemy in this regard. We see our bodies as temples, unless we can really make a buck off of something. We look for convenience over the right thing to do. In the town where my parents live, there used to be a powder mill. No, not cosmetics. It was a major war machine facility. They produced gunpowder. And, like many other industries, they operated on a river, making use of natural energy by using a water wheel. And then they dumped all the effluvium of death back into the water, as a way of saying thanks to Mother Nature. They were at the highest productivity during the Civil War, and I have yet to see any studies following the impact of the nastiness pumped into the Scantic at that point. The powder mill was flanked by a “recycling” plant, which basically took waste materials (fabric, primarily) and turned them into something usable again. It sounds great, except the same problem followed. The river was apparently some horrific color for quite a while. Even now, I can’t fathom setting foot in its waters, because the times I let my dog take a drink out of it, found her having acute stomach trouble immediately afterwards. That could, of course, be runoff from the beef farm nearby as well. Yech.

I’m saying all of this because I’m not as worried about being a ticking time bomb of chemicals as I am about what I physically have control over going into my body, or into my kids’ bodies. We’ve cut out trans fats, high fructose corn syrup (corn refiners’ association, go make biodegradable plastics and stop crapping up our food!), preprocessed foods, and basically anything that seems questionable. I have to have a guilty pleasure, so I’m not ready to quit Dunkin’ Donuts yet. Sorry.

I think if we’re all really keen on purifying the planet, we ought to be doing TWO things.

Number One: Put pressure on China and other polluters (their pollution gets to the U.S. eventually), through the power of the dollar, and the power of complaining – to government and trade officials, and to companies who buy Chinese made products, or have their companies producing in China via cheap labor.

Number Two: Develop your compassion for those who are still living in Dickensian filth and despair. It exists even in our country, but mostly overseas, where children work all day, and families languish, dreaming of people like us, who complain that we can’t find cheap cashmere or enough palm oil products.

Links: www.gearthatgives.org
www.mongabay.com/borneo/borneo_oil_palm.html
www.sspconline.org/article_details.asp?artid=art71
www.chicagotribune.com/chi-china-cashmere-htmlstory,0,7007933.htmlstory

The school fandango

Toward the end of last year, all of the parents of kids in the autism program in town were invited to an evening meeting, where we all met the new director of student services. More importantly, we all met each other for the first time. It was a weird feeling, for me, because I had wanted to meet these parents for a while, hoping that the school would facilitate it, but it took ages to finally get to that point.

My son came into the program four years ago. He was alone in it, I think, for the entire first year. Then, he was joined by N & J, a boy and girl, respectively, who were a lot more mildly on the spectrum. N is now in the first grade room exclusively, and has always been verbal. He’s a really sweet kid with a cute grin.  J is a pixie of a little girl, also verbal, and is now in the kindergarten room, mostly. For almost a year after, it was the three of them. Then came K, a powerhouse little girl, who would often be found under her table, yelling at her para. She LOVES my son. My son knows, and is fond of her, but a little wary of how energetic she is, I think.

Last year was the boom, though. We got S, a boy, R, another boy, and then another boy whose name eludes me. You can see the stats almost screaming at you.

Anyway, I sat there with my husband, looking at all these parents. I had had the distinct feeling that we’d been deliberately NOT introduced before. It’s a long story, but the SpEd teacher who’d been in place when we first came into the program had been apparently working hard at not really working her job. I don’t want to divulge how I came to find out these things, but suffice to say that I was dismayed to discover that she (an autism parent herself!) had been playing games with us, the parents. I was grateful for some of the little things she’d done, but in the big picture realm, she’d bailed on helping in the big ways. And then she left the school on the hook by letting them know that she’d taken another job, the week before school started. Last year was filled in by a teacher from Hartford, a true crackpot if I ever met one (she wore shoes with springs…every day). That one was out of her depth, and the program was spinning out of control. I walked in to the room one day and it was, to use the term carefully, bedlam. I was genuinely upset and worried at that point, and made no bones about telling this to this new director of student services later, in a one on one meeting.

As I say, though, it seemed that the parents had been kept apart, perhaps to keep us from comparing notes and raising the alarm earlier. And then the new guy started talking, and we were all aware of a palpable sense of relief. He came to our town from the Pacific Northwest, and has been working with autistic preschoolers since the early 1980’s. In fact, I was astounded at this hiring coup by our town. Gobsmacked. He began by telling us that he envisioned the program expanding to involve community support, volunteer respite care, parent training…nothing short of miraculous to those of us who had, perhaps, lost faith in our school a little. Another mother and I were getting teary just listening. It was like someone had heard that we were lost, out in the dark, and came to find us with a lantern and St. Bernard.

I do really love our town, which we moved to and adopted as our own. We put up with having a Nascar minor circuit track 1/4 mile away (LOUD!!!!), as well as a house that we bought on a whim of helping family out. Now we’re alone in a duplex, when we’d really just like a farm. But we’ve, I think, decided to deal with the not so great aspects of life here, primarily because of the autism program. We know how lucky we are with it. I did not have to fight to get him in it. All I did was walk in, say, “We have his diagnosis from UConn Developmental Psychology,” and they took the lead and ran with it.

We just have a sense of urgency that has not really been shared by everyone. The paras have worked themselves to death these past years to compensate, for instance, for the shortfalls of the SpEd teachers. However, it suddenly became school policy that the paras were not allowed to talk to parents outside of school. I feel that this is a load of crap, personally. They spend the most time with our kids. I’m not going to ask them to step over any ethical lines in how I talk to them, but I’d like to know who these people are.

But, since we have this magic man now, I am going to flog to death the topic of Open Communication. Transparency. As in, don’t B.S. the parents!!! Our Dr. D says he wants our town to be a model program, one that other towns will want to come and observe. I want to believe him, really I do.

We had our first parent meeting of the year (after I met with the new SpEd teacher for two hours) last week. We finally had a moment when the parents were talking to each other, and discovered that we all kind of feel the same way about the vaccine question, amongst other things. We all joined the “Jenny McCarthy needs to shut up” club together that night. One of the moms said she joins every online forum and community, because “why not?” I think she’s braver than I, not to mention has a tougher hide than I do, probably. I have stayed out of a lot of online chatting, simply because my blood pressure really can’t take it. Another reality for our family is that I have not found too many people who share the particulars of our situation.

I know that sounds weird, but all the books I read, all the postings I have read…I don’t feel like I’m reading about my son. His behavioral issues faded pretty rapidly once he got into all-day school. He’s happy 90% of the time, even when we don’t know what he’s happy about, necessarily. He goes to bed at night, between 7:30 and 8:00, and doesn’t wake up again until 6a.m. We travel with him, and he rolls with the punches. It’s hard for me to explain this to other parents who haven’t slept a whole night since their kid was born, nor gone on a vacation. I’ve tried…but it seems to get dismissed. I think some folks secretly have thought that my son isn’t autistic, or something. But, since I know what we did to get him to where he is, I will share that in a later blog.

School is such a strange dance for us, though. I’m only just now feeling like there is no hidden agenda, no subtext to what’s being said. I’d be interested in hearing from other parents about their experiences with schools; what size town, what size school, what level of effort, what kind of budget, that sort of thing. I’d also like to hear about what parents have done to involve the school in understanding their child. Right now, we’re mulling over, at my suggestion, having an autism “symposium”. I’d like to see the whole town invited. We’d like to talk about autism, about what it’s like to have your family dynamic shaped by it, and that no, your kid is not going to “catch” autism, or become autistic.

Hallowe’en and the kids

I’m a child of, *sigh*, the 80’s. I was born in ‘75, but my first memories surface around 1980. Back in those days, Halloween was just starting to churn into a massive commercial moment. The 80’s saw the end of the innocence for it as well, with fears of poisoned or otherwise tampered-with candies sweeping us all up. Many of us probably have strong memories of candy inspection time after we got back home, with our parents scrutinizing, maybe even making comments about suspect neighbors.

I grew up on a dead-end street, in a rectory. My dad is a minister, but we had no particular “thing” about Halloween, so long as everybody attended to the meaning of the following day (All Souls). Our street was off a long, busy hill street, which we never ventured onto until we were much older. Instead, we’d go up and down our (small to a candy-hungry child) street, bemoaning the houses whose lights were off. This, of course, was back in the day when “fun size” candies still seemed chintzy to most people, so we’d get the big boys dropped into our Strawberry Shortcake (and by our, I mean, my) pillowcases. My costume in 1980, my kindergarten year, was The Fonz. This was my own idea, and I could tell, even at the tender age of five, that my mother was pretty much at a loss of how to take my long hair and fashion the greaser ‘do out of it. Eventually, we settled on a black knit cap being a good enough fake. I can’t remember the rest of the costumer, I just recall the costume parade that we all did through the rest of the school (while the fifth graders probably mocked us). I was so proud of myself for coming up with that idea, and of my admiration for Fonzie (I was also in love with most of the guys from Sha-na-na as well…probably a foreboding of my future choices in men).

In later years, I was a rodeo clown, Strawberry Shortcake, and, I think, a storm trooper (probably because of my older brother and his Star Wars obsession), as well as that lovely super hero below:

Wonder Woman!

That’s my sister as Raggedy Ann, and my little brother, who was probably too young to go out.

I loved those Underoos.

I loved dressing up. It was the one time of year that I could be anything or anyone, and not worry about anyone thinking I was weird. As I got older, I remember an alien princess, an egyptian princess, amongst other strange things, I’m sure. High school is a risky time for wearing a costume to classes. I looked, but the only year I got photographed was our senior year, when I came in as some sort of beatnik Bohemian guerilla. The photo has me in all black, looking like I was a member of the SLA, or Shining Path. I’m pretty sure I thought I looked cool.

Che Guevera’s sister.

College gets even riskier, because you add other things to the mix, like no parents, alcohol, and all-night parties. And then, when you leave all that behind, and the magical transformation occurs, suddenly you find yourself on the other side of Halloween. You’re a parent.

I always start off with ambitious ideas of what to have the kids dress up as, but it’s tough, since my older kiddo doesn’t really get much out of tramping around knocking on doors. He was only nine months old when I dressed him for his first Halloween, as a baby Legionnaire (Roman, not of the French Foreign kind). I made him a pleather fringe kilt and breastplate (while thinking I should have done him up as Rob Roy instead), and collected change for Unicef, while parading him around like only a dopey first-time parent does.

After that, we took a break from Halloween, at least going out. When you have a kid who isn’t going to pick a costume, doesn’t like candy (unless you count gummies), and doesn’t talk, it’s better to just focus on tossing buckets of candy at kids who come to your door.

Then I decided to give it a go again, and let him be characters that he was familiar with. Two years ago, he was Go, Diego, Go!, and last year, he was Woody from Toy Story.

The reluctant cowboy.

My mother made the vest, because we couldn’t find anything like it. This year, they have the whole Woody set at a local costume shop. This year, he indicated that he’d like to be Buzz, even though he still won’t do candy. However, for school on Friday, they’re supposed to dress up to be in a vocabulary parade. His word is “ancient” (the choice of the archaeologist – and very easy to understand in a visual sense). I’m going to make a cape, and iron on pictures of famous archaeology sites…I know it’s more for my sense of ease than his, but I’ll get him to help me somehow. Maybe we’ll put on some paper projectile points.

His younger brother was trying to con me into making a Gordon costume to continue last year’s theme:

Choo-choo’s on the brain.

But, we’ve settled on a middle ground. He’s going to be a rock star. I think he really believes it right now. He was dancing like a madman to Pink playing yesterday on the Today Show. And yes, I made that thing up there that he’s wearing. Never try to sew overalls without a pattern. My painting was the only thing that saved me there.

For kids on the spectrum, I think Halloween is very doable, as long as you drop all expectations and let them tell you what they are comfortable doing. For me, it’s meant letting go of traditional trick or treating. We have done the mall trick or treat, which is fun for both of them, because they enjoy looking at all the other kids running around in their costumes. We might do parties as they both get older. But, if your child wants to stay home, you can still encourage a dress-up party, and let them get into handing out candy. Our big task is finding costumes that involve zero makeup, no masks, nothing bulky or uncomfortable. We want him to get through whatever we all decide to do without ending up crying, or upset. It should be fun.

One thing he really loves is painting pumpkins, by the way. We get ours for really cheap at a local farm, where the big ones are five bucks and the sugars are only a buck a piece. I have six sugars waiting for painting. It’s easy to let them do, no cutting, no frustration. It can be abstract. I also keep sequins, stickers, feathers, and glitter handy for those really expressive moments. Mind you, I am about the most uninspired crafty mom there is (although my neighbor would probably disagree), so this discovery has been great. I hate being the only pumpkin gutter.

We love our Halloween specials as well. I did see, as a warning, that a lot of parents are complaining about the Great Pumpkin, that Lucy calls everyone “stupid” through the whole of the show, so maybe skip that one. We’re looking forward to Backyardigans, Blue’s Clues, and Dora for our Halloween fun.

 

We stride through uncharted lands full of landmines

As parents of autistic children in the 21st century, we owe a great deal to parents in previous generations. They were the ones who fought the battles to keep their children at home, rather than see them institutionalized. They pushed for better diagnostic criteria. They sought out better understanding of autism, so that doctors would stop calling it “refrigerator mother syndrome”, amongst other subtitles. All the early references to autism were so incredibly negative that it’s not hard to imagine the despair that must have been felt when such a diagnosis was made.

Of two cousins in my family with autism, one cousin is now in his fifties, and has been living in group homes his whole adult life. He started life with hydrocephaly, “water on the brain”, and suffered some brain damage as a result. He was diagnosed autistic as an adult. Now, we look at such a case, and think to ourselves, all that time lost. Certainly, if anyone had made the diagnosis earlier, he could have had a chance to be at home. Moreover, he could have shown his parents that they were not to blame. Guilt pervades the entirety of the parental community, evidencing itself in myriad ways. I feel that the typical model of guilt is the parent who spends time looking for causality, blame, or cure. It is unhelpful, for instance, for parents to see Jenny McCarthy smilingly promoting a “cure” for autism, knowing that she was financially capable of seeking hundreds of options for her son; it’s a disservice to ignore all the other treatments in favor of a simplistic, and scientifically unverified life change. I know that’s going to irk some of you, but this is how I feel; we all have to make decisions for our kids based on what we feel is right or wrong. That’s what this is all about.

The other cousin is now twenty. He lives in the midwest, still with my aunt and uncle, on the family farm. Because the state in which he lives has been committed to interventions for school-aged children, he thrived, year-round, with a full-time aide, mainstreaming, summers covered by university students, and respite care, not to mention health benefits. All this was paid for by the state, which is fortunate, since my aunt and uncle have no insurance for themselves right now. My uncle hasn’t seen a doctor in fifteen years or so, and my aunt was recently diagnosed with Wegener’s Disease. The situation is especially alarming, given the history of heart disease in both my grandparents, as well as my grandmother’s diabetes. Since graduating from high school, my cousin has slipped into the shadows of a once-supportive system. He is able to be covered by Social Security, but if something happens to his parents, what will happen to him?

Autism, as you can see, is both a silent occupier of our society, as well as one that is becoming more urgently loud.

I’m a parent as well, and I plan on fighting for my son to be college-ready. I see a future for him where he can choose a field of study, and modify a career to fit his comfort level. I listen to autistic adults who feel that autism is just a “different way of being”, and I feel a little irritated about that, because the implication is that some of these adults want to be left alone, and not have children put in interventions. I truly disagree with that; here is why. Everyone who is able to is expected to make his or her own way in this world, sometimes with accomodations, sometimes fighting to stand on his or her own two feet and find a way to make it work for them. I would be ashamed of myself as a parent if I sat back and allowed my autistic son to get away with everything, while expecting his younger brother to do differently.

I say to these autistic persons this: So it’s uncomfortable, and feels like you’re being pushed to do things you don’t want to do. Do you believe for one minute that the rest of us go to work every day because we want to? Do you think that the men and women who work menial jobs, minimum wage, and who struggle to feed their children LOVE or even tolerate their situation? They do not. They go because they must. Life is a struggle. It’s unpleasant for many people. The trick to surviving in this world, for ANYONE is to find the things that bring us small moments of joy, and make them what we fight for.

Lots of us who are parents of children on the spectrum find ourselves navel-gazing, which is a metaphorical look at the definition of autism. We find that we start thinking that we too must be somewhere on the spectrum. For me, it’s things that others find silly. I have to have specific types of socks; I hate cotton, and can’t stand the sound it makes as it goes over skin. The sheets on the bed must be taut, unwrinkled, or I tug, tuck, and restlessly lie awake. I’ve always disliked being touched excessively. Too much noise from people talking or shouting is enough to drive me into a closet. It’s actually gotten more pronounced as I have gotten older, which is, I think, something that could fool me into believing it has its own will. The only thing that has changed in my life that would enable these quirks to grow is that my family and I have gotten more isolated. While I hate talking on the phone, I know that I used to do it often, and without qualm.  I used to go out, and enjoy being around loads of people. This leads me to believe that it is a self-feeding situation. That it gets easier or harder depending on the choices an individual makes about his or her future.

We’re still in unmapped territories. Nobody knows what the face of autism will look like in fifty years. My husband thinks, for instance, that it’s possible autistic people will save the world. I wonder whether my two sons will come together in their two halves of opposing strengths and do something mindblowing together.

There is no make-a-wish foundation for kids like ours. Autism isn’t terminal, or even terrible. It’s just a struggle, for everyone involved. We all have to work our butts off to accomplish anything. And because there is still such stigma attached, because there are idiots and jackasses who call autism “imaginary”, or “bad parenting”, the parents still suffer, while we try to shield our children. Some kids on the spectrum are painfully aware of the things that others will say; my son is blessedly oblivious for now. He looks like a typical kid most of the time, only evidencing some of his behaviors when he’s excited or upset. It’s then that we get the double-takes. I have read about so many horrible and cruel encounters between parents and the general public. I know we’re fortunate, because we seem to only come across folks who immediately know what they’re seeing (although I suspect that’s largely because we tend to behave as though we’re unflappable and know what we’re doing – an old military trick). But I admit to a twinge of jealousy, maybe, or something less nameable, when I watch Little People, Big World and Jon & Kate…, and see that, because their situations are visible, understood, they’re getting something because of it.

Nobody would make a show about us, or most of the families who live with autism. We live in an undefined, confusing, and controversial world. I have the feeling that a family who would get filmed will fall into the prevailing culture of autism and “cureism”, leading the rest of the uninitiated to believe that we all feel the same. I do feel a little differently than others do; I know I’m not alone, though. Lots of folks have confided in me that they feel the same, and it’s always with that same sense of relief, that they’re talking to someone without feeling as though they’re on eggshells. This is the current state of things. This is where we are. We cannot seem to agree on where autism originates, what treatments are best, whether some are misguided or dangerous, or even what to call the whole thing.

I have no friends who are parents, nobody that I talk to, because I feel isolated. In this isolation, I have talked to professionals, mainly, which is how I have come to feel so strongly the way I do. Even my husband gets caught up in the froth of new and bold announcements, and we inevitably have the hashing out session, where we try to get to the heart of whatever it is, and decide whether it has merit…or is another genie in a bottle. We’re all alone, at one time or another, left to stare at our shivering selves in dark mirrors, and wonder what went wrong, where did it go wrong? It’s the question that is wrong, however. I don’t begrudge anyone holding out hope, wishing that a diagnosis might be reversed one day, praying that some wonderful treatment will be proven out. I just can’t see myself putting my child through things that I doubt. I would have to have nothing less than absolute faith before I let him be put in the role of testee, because of the rather grim history (we should all be aware of) of subjecting “different” human beings to grotesque medical experiments. We should all be cautious, and be cynical for our kids’ sakes, and be willing to put on that battle armor against anyone looking to make an easy buck off of us.

We have an autism community that is at war with itself. There will be no true progress until an accord can be made.