Big Ten

Taking up the thread from Mom-NOS, here are ten ways Joey and I are alike:

1. Neither of us like hot water on our hands or feet. Water than my mom thought cold used to send me screaming when I was a kid. Joey hates hot stuff, too.

2. Neither of us like to wear shoes. Bare feet are best.

3. We both love numbers. Onceupon a time, I was the top math student in my high school. Counting is comforting.

4. We both collapse when tickled. As in, lose all motor control, heap on the floor.

5. We both love Christmas, and sparkly Christmas ornaments. We both love nothing better than to spend an afternoon at Valley View.

6. We both love to cuddle. Even when Joey was teeny tiny, he loved nothing better than to be in bed with Mom and Dad, getting squished. :)

7. We both love the ocean. We could just stand at the surf and watch the undulation of the sea forever.

8. When in doubt, we both smile. Joey excudes positiveness. I have often been asked, "do you always smile?" I wish I could honestly reply "yes."

9. We both have little patience for eating. It takes me a lot of effort and energy to sit until everyone at the dinner table is finished- as soon as I have eaten, I'm ready to move on. Ditto for him. Sitting still is not something either of us do well.

10. We both have scattered interests. I know the common idea of autistics is a hyper-focus on a narrow range of topics, but for us, we tend to scatter and not hold too much interest in a single topic for too long. I'll watch one movie over and over for a few days straight, but then my brain moves on to hyper-focus on the next topic. Joey does this- he hones in for a few days, then moves on.

Ten ways I am like Andy:

1. We both love strawberry stuff. Yum!

2. We both like to look at packages in the graocery store. Some labels are really interesting!

3. We both like animals. I wanted to be a vet once upon a time and another life ago. Andy just adores anything furry. Or scaly. Or breathing.

4. We both have the devil in us. And that's a good thing.

5. We both like to look at books in bed. Usually together. :)

6. We both like flowers. I like looking at them and smelling them. He likes pulling them apart and finding out how they grow.

7. We both find car rides relaxing. He still gets to take a nap.

8. Neither of us like cacophony. We both find it highly disorienting and irritating. Andy will actually scream, then pace and track like Joey after being exposed to sudden loud noise, like when the band starts up at church.

9. Neither of us like cheese goldfish. I prefer plain. He likes pretzel.

10. We both like to make things. Andy loves little art projects, even if he likes keeping his fingers clean.

Anyone else want to play?

Communicating

As an art historian, part of what I am studying and analyzing is how people communicate. You have an idea (or your patron has an idea) and it must be communicated. How will you acheive this? What will need to be shown? How much of that message should be overt, and how much covert? What images and techniques will be used to convey meaning?

One thing I have notived is that when communicating a new idea to a culture, it is often communicated using images and ideas the culture is already familiar with to get the new idea across. For example, in early Christian art, much of the early imagery is taken from pre-Christian art. These images had meaning for early Christians because before they were Christians, they had been non-Christians; their culrue had been non-Christian.
Images of Apollo, with the connotations of light, power, and protection made excellent early Christ figures. The bearded Zeus, with the connotations of kingship, power, and maturity became a later favorite, particularly the image of Zeus at Olympia, where he sits enthroned (the image of Lincoln at teh Lincoln Memorial is also based on the Olympia Zeus). The Good Shepherd, with its roots in images of sacrificers and devotees combined with teh idea of the shepherd who protects his flock was another great favorite (usually in the youthful Apollo guise). Early Christians quickly and clearly got the idea of who Christ was and what Christianity was about by viewing these images.

This is a useful strategy for speaking to people about things they don't understand: put it into terms and ideas that they do understand, and go from there. Images and words are metaphors and analogies; re-presentations of ideas and experiences that another person may not have. How close can you come to the original, when the original is beyond reach of the viewer?

From this idea, we get the use of rainbow spectrums for autism. Puzzle peices. Trips to Holland. Are these analogies, symbols, metaphors good ones, or not? It depends on how they are used, really; but no analogy is perfect, and some of them are downright off-base; but can they still be used to communicate? I don't care for the way the puzzle peice has been used, but it is very useful in starting a conversation about autism, because it is so recognizable. The spectrum thing, taken from the diagnosis "Autism Spectrum Disorder" has its usefulness, but also its difficulties. Even the trip to Holland has its problems as an analogy, but when trying to explain the experience of parenting to a clueless person with no special needs kids, it can be really useful. Trying to explain parenting generally? Probably not. The image has its limitations, and those must be recognized; but don't toss the baby with the bathwater.

Trying to find new ways to discussing autism and being human with people who have more ignorance than sense is a great challenge.

How does one communicate to people who have no idea what you are talking about? Have never experienced what you are talking about? And do so in a way that makes not only the experiecne itself a little clearer, but also communicates what you want to say about that experience? What should we emphasize?

I've been putting together a variety of t-shirt designs as alternatives to the ubiqitous puzzle peice, because I think the puzzle peice misses some of the point. The way it is used implies that only autistic children are "puzzles"- but any parent can tell you that isn't true. All children have that mystery, all children have needs, we are learning about all of them. We are all puzzles.

The misuse of the symbol has lead to it being used not to refer to kids, but to autism itself, as a puzzle that needs to be solved (and thus reradicated) rather than as a symbol of unacheived understanding. Bleah.


During the Renaissance, a person's uniqueness was valued. Genius was something to pay an artist extra for. Being in control of your own destiny, educating yourself, creating your own life was valued. Today this individuality seems to be more of a subculture, an alternative lifestyle, rather than the mainstream. The lessons of the Renaissance may need to be re-taught.

Sometimes We Let Him Sleep

Oh, dear. This morning, Joey woke up grumpy. Mommy woke up grumpy. Not good. Most of you can see what's coming.

I have been, as you may suspect from my absence, using every spare moment of any point of my day to read Harry Potter. That is now complete. I refuse to give anything away. However, this has also cut into that most valuable commodity, sleep. No sleep=grumpy mommy. Silly mommy, she needs to go to bed, but she's readignHary Poter instead. Silly,silly mommy. Sleep is a waste of time.

So naturally with me grumping about the house this morning, and Joey grumping about the house this morning, when the milk got spilled, all hell broke loose. Level 8. Just what mommy wanted this morning. Worse, he was still in the middle of it when the bus arrived. The bus aide actually came into the house and got him- the idea being that the bus is very calming for him, so we wanted to get him on it. But I felt really, really bad, because I'm sure he was picking up on my grumpiness, which was my own fault in teh first place, because I didn't go to bed, because I was reading...

Meanwhile, someone bit Andy. I took him to the gym, and then took him swimming, and there are nasty bite marks on his shoulder- too small to be Joey, but Joey doesn't bite anyway. So we made sure to reort that to the gym people, so they can be on the lookout for a biter. Andy didn't complain about it until the gym people started fussing over it. I didn't intervene on that point, because I want him to understand he needs to tell somebody if he's bitten.

So when the boy camehome from school, I scooped everybody up an took them to Arby's for lunch. Spiced, curly french fries were a far bigger hit than I expected them to be, and I got to have a reuben for lunch. ;)

I think everybody's feeling better now. The power of food...

It's here! It's here!

Harry Potter and the Deathly Hallows is here! Woo-hoo!

I ran downtown and got one of the last copies available for the midnight madness. Very exciting. But I haven't gotten a chance to crack it open yet- working today. So here are ten things I hope are in this book:

1. I want a real nagini to come kick Nagini's butt. I know it won't happen. But I can dream. I still fume that Nagini is not a cobra.
2. I want Snape to turn out to be a complicated good guy. He's such a delicious character, I'll be really disappointed if she flattens him out and makes him evil.
3. More centaurs, giants, and house-elfs. I want to see the magical world filled with more than just us, and have them have their own struggles with good and evil.
4. I want Ron, Hermione, and Harry to live.
5. I want to know more about the curse that killed Dumbledore's hand. Was he turning into something really bad? Or was it just killing him?
6. I want Molly Weasley to go medieval on somebody's butt. She must be a pretty powerful witch, but we haven't really seen any of it. Ditto for McGonagal.
7. I want to know what Dudley was sweating bullets about when he was attacked by the dementor. What was his worst memory?
8. I want lots and lots more about Lily Potter, and when James learns not to be a little twit.
9. I want to know what happened to Ollivander.
10. I'd like more about Slughorn and the Slytherins. I'd like those shades of grey clarified- being a Slytherin is not being evil, but ambitious and self-serving.

Here's to J.K. Rowling, and the world of Hogwarts!

Strolling down Memory Lane (without a ding-dong thing on my mind)

There was something I was going to blog about. I've beenthinking about it since Wednesday. I thought about it on the way home from therapy. It was really, really good, important, pertinent to other conversations floating around the blogosphere. Now I have a minute at the computer.

I cannot remember what I was going to blog about.

I'm fairly new at the joys of memory loss and brain hiccups. When I was young, "steel trap" was an understatement. According to teh new ABLLS report we have for Joey, he can repeat back a series of four numbers. At his age, they never figured out how many I could do, because no matter how many they gave me, I could recite them back. I could recite exact conversations I had with people years before, and in my head could even see the faces of participants and the setting around us, and sometimes even the exact floor layout of where=ever we were. I would have made a fabulous witness, but fortunately, I didn't witness much that was that important. I have retained snatches of these memories, but like most people, the majority of my life is now lost to the sands of time. Sand on the brain.

This began in earnest when I became pregnant wih Joey; and then the pregnancy with Andy excelerated it alarmingly. I understand this is normal, especially for women- the hormones of pregnancy actually cause brain damage. I just find it incredibly annoying to walk into a room and have no idea why I am there- or even how I got there. I've taken to hooking my keys on the curtain rod on the door, otherwise I'd take an hour every morning to find them. This time of year I stock up on 10-cent spiral notebooks, because I use them everywhere- whenever I have a thought, if I don't write it down, I risk losing it forever to the sand in the brain. I started using the engagment calendar in my computer. If changes don't make it long enough to be recorded there, I get into trouble- miss appointments, show up for one that were cancelled or moved, etc.

Growing up really sucks.

Don't Be Afraid

Abfh has put up a really funny and thoughtful response to one of my favorite essays I use to try to knock a clue into the clueless, Welcome to Holland. If you're one of my friends without special needs kids, I recommend reading both essays. They are both wonderful gazes into coping with a life that isn't going as expected.

One thing I mentioned in my comment to abfh is that there is a basic attitude and ignorance problem in the "normal" world regarding not only autism, but special needs generally. The example that goes in context here are the parenting and childbirth classes I took when I was pregnant with Joey.

The textbook that came with the class does have a chapter on special needs children. It mostly focuses on problems with premies, but it also mentions things like Down's Syndrome. Autism isn't mentioned at all. The information is mostly about testing, and "talk to your doctor." Thre is very little useful information. The possibility of having a special needs child was only mentioned in passing in the class itself- mostly Down's Syndrome, and a mention that some kids might need some time in the NICU, especially if they are premature.

Why omit this very real and natural possibility? Why not bring it into the discussion, and let expecting parents think about preparing for the possibility? It's like being on a plane to Italy (you knew this part was coming, didn't you) without even having the suggestion that landing in Holland would be a possibility- and in fact, many excited holiday-goers have no clue that a plane routed for Italy could possibly land anywhere but Italy, or even that other countries exist. I mean, what if the plane lands in Lichtenstein (a country of which I am also fond)? I know a lot of people who have never even heard of Lichtenstein.

Wouldn't it be far better to note the possibility, so that we can at least take a peek at a tourguide of Holland before getting on the plane, or have an idea of where the embassy might be? But this is not the prevailing attitude "out there" in the "normal" world. Instead, instructors are concerned about frightening new parents "unnecessarily." Frightening them?

Standing in front of new and expecting parents, I think the first thing to say is "don't be afraid." The second is, "expect the unexpected." Even "normal" kids have "special needs." Some people just need more support than others to be able to survive and thrive. A child with special needs- born with them or otherwise- simply needs some extra support. How much depends on the need. What we should be providing is some basic resource information. OK, your kid has special needs... now what?

Parents who themselves have special needs seem to have a firmer grasp on the concept, because the possibility is so very present to them. For people who have never really dealt with special needs and disability, the whole idea is foreign. These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is. These things are not part of their world. When I spoke, once upon and a long time- over a year- ago, about the day the word "autism" came into my life, that is really how it felt. I had no idea. And folks, I'm a very educated person. I know why people think of Rainman when the word autism drifts in- its the only exposure people had, if they had that much. Nowthere's a couple other pop culture references, but no more real education out there for the general, run-of-the-mill Nellie or Nathan Neurotypical.

People with "special needs" and disabilities are different. Different is unknown. Different is scary. But why? Take the fear out of the possibility of having a special needs child. Special needs kids are kids, like all other kids, with their own talents and gifts to offer, and their own lives to live. Don't be afraid. All kids come with challenges.

What happened at school today?

Joey has been picking up on questions about his day. He's at least starting to understand that we expect him to make some kind of answer, and that saying something to the effect of "I had fun!" means the activity is likely to be repeated. He will answer yes and no questions with more or less accuracy, depending on how tired he is and how much of his attention you have.

However, he will not talk about school. Trying to get him to talk at all immediately after school is a lost cause. I am going with the working assumption that he is tired, trying to regain his bearings, and perhaps is simply unable to access language after a lot of hard work. I'll keep you posted as I test this theory, as he gains more ability to communicate with us. Anyway, no point in grilling him immediately after school. I'm lucky to get any words at all.

However, asking him questions about school is generally problematic. If he's really with me and I have his attention, he'll give me scripted responses (What did you do at school today? "I had fun, Mrs. Huff was at school today, Went to school" etc.) and will answer all yes/no questions with "yes" (Did you sing a song today? Yes. Did you read a story today? Yes. Did you play outside today? Yes. Did you turn your teacher into a frog today? Yes.) For other activities, I get some spontaneous answers. (Did you sing a song in Speech Camp today? Yes- Wheels on the Bus! Did you enjoy swimming today? Yes- sprinklers! Fun!) For school... nada. i have no idea what he's doing this week. The teacher sent me home a note on the first day, but since then, nothing.

I find this a little odd, and a little worrying. I could do some more peculation as to why school seems to be a taboo subject for question-answering, but it wouldbe just that- speculation. It's also worrying that I have no way to really supporting the school program at home. If I don't know what songs are being sung or what stories are being read, I can't keep up the theme at home. For example, if they are doing, say, Three Billy Goats Gruff, I can play the Leah's Farm Signing Time more, maybe plan to take him down to Maymount to feed goats this weekend, and read him fairytales with trolls, and talk about fairies and things with him. Or if they are singing "Wheels on the Bus" every morning, I can get out his buses and we can sit outside and watch the Fred Bus and the trolley go by, and talk about how people get where they need to go. But I have to wing it.

I'm starting to think he really did turn the teacher into a frog.

Non-listening

You know it's time to stop trying to discuss and just smile and nod when these words escape the lips of your conversation partner:

1. Yeah, normal kids do that, too. Or it's variant, "Yeah, my [normal] kid does that, too." Perhaps to a far lesser degree than my kid does whatever we were talking about. Usually I get this about meltdowns. "Yeah, my kid melts down in the grocery line, too. She hates to wait. She always wants a candy bar."
What I want to reply: "Really? Can she still speak well enough to press for that candybar she wanted? Yes? You have no clue what a meltdown is."
What I usually say instead: "Really? Must be tough to get her through the candy line. They need to keep that 'no candy/no tabloids' line open more."

2. You know, I'm a little autistic myself. This line is usually followed by some minor problem that vaguely suggests a desire for order, or habit. Such as "I don't like florescent lights" or "I like having my coffee with two and a quarter creamers." Small sensory issues are not autism, people. What really gets me is this usually forebodes some comment about autistic adults not needing services (see #3).
What I want to say: "Grow up."
What I usually say instead: "I have my foiables, too. If we didn't, life would be really, really dull."

3. S/he doesn't need {insert service here}, s/he just needs to grow up and learn to do things for him/herself. I wish I had someone to {provide specific service} for me!" OK, folks, I have mild executive dysfunction, some sensory issues, and an occasional stutter. These things don't get int eh way of functioning for me. As an adult, I am expected to clean my own house, keep my own records, shop for my own needs, etc. and I am able to do so, even if I need a little extra push with systems, ideas, and tools. It may not always happen, but I an able to make those compensations. Some people require extra people or extra equipment to make those kinds of compensations- such as an aide, or a communication board.
What I want to say: "So, you're saying a paraplegic shouldn't use a wheelchair, because he's got legs?"
What I usually say instead: "If you're having trouble with {specific service mentioned above}, maybe you should {hire someone to provide that service/buy equipment to help complete task.} [Since the most common one is about having an aide to do things like help with grocery shopping or household tasks, I am usually recommending a maid service or a good mop.]

4. Your child isn't autistic. He just needs a little discipline! This is usually followed by suggestions of violence.
What I want to say: "And where di you get your degree in child development or neurology? With a specialization in autism? And on what basis are you making your diagnosis? How would you like it if someone smacked you for wanting coffee in the morning?"
What I usually say instead: "Yes, we're really lucky, Joey's a good kid, working hard. However, his doctors all agree, he's definitely ASD. I see he's bothering you with his {unusual behavior- usually tracking}, so I'll let you get on with whatever you're doing- we need to go home."

5. Oh, he'll be fine. My cousin's friend's great-aunt's brother twice removed didn't talk 'til they were four! I got this a lot more when Joey was non-verbal, but it still pops up when people notice he's not speaking the way other five-year-olds speak.
What I want to say: "Did they say "momma" and "daddy"? Did they point to objects? Yes? Joey didn't."
What I usually say instead: "How interesting. Speech delays are fascinating. Anyone else in your family have speech delays?"

6. All children have eccentricities. This is another one of those red-flag phrases that means the conversation is about to bend in the direction of "Your kid's not really autistic" or the person has little experience with sensory dysfunction, ritualistic behavior, perseveration, or echolalia. Yes, some little kids like to repeat words. Few repeat entire episodes of television shows. Yes, some little kids like to jump around and crash into things. Few will want to do this for hours on end, and to the point of bruising themselves. Lots of little kids don't like sudden, loud noises. Some will even scream in response. Few will have hour-long meltdowns or have to track lines in the carpet for the next half-hour. And few would think the closing of a car door qualified as a "sudden, loud noise."
What I want to say: "Stuff it in your ear."
What I usually say: "Yes, that's how personalities are made. My guys sure are characters- didn't have much of a chance not to be, with me as their mother."


Sometimes trying to explain the difference between raising a normal kid and raising an autistic one is just not worth the effort There slittle point in trying to talk to someone who is telling you they have no intention of listening to a word you say. Tiem is at a premium here; I have better things to do. When you get that cue of "shut up- I don't want to talk about you or your kid" with the further implication of "I just want to talk about myself" sometimes the best thing to do is to oblige, and get out of the conversation pronto.

The Bright Side

Sometimes when things happen, it's better to look on the bright side.

Problem: Your kids are bored in the store and start smacking each other for fun.
Cons: Screaming children in the middle of a crowded Walmart is never a plus.
Bright Side: You aren't going to be in the store very long, so you won't spend as much money.

Problem: Your kid knocks his head against your $3000 LCD HDTV, cracking the glass.
Cons: No TV. You think we can afford to replace a $3000 TV? And we checked- it costs even more than that to fix it.
Bright Side: The Oobi theme will no longer be piped at top volume through the house, and you may get "Sesame Street" out of your head at last.

Problem: Your kid gets hold of a sharpie pen, and loves to write on anything that is NOT paper.
Cons: You now have black scribbles on every surface imaginable, and some you thought were inaccessible. The furniture, the floor, the walls, the computer screen...
Bright side: You have a blossoming artist. You discover what will take sharpie ink off of surfaces. There are no more sharpie pens in your house.

Problem: Your kid gets carsick unless you stop every 30-40 minutes, and you have a four-hour (or more) drive ahead of you, and you can't cancel the trip.
Cons: The four-hour trip is going to take a LOT more than four hours, and you are going to need to take a LOT of extra clothing, and you're going to have a LOT of cleaning to do until you figure out today's pattern of warning of signs (did I forget to mention that they change?)
Bright Side: You will know where every fast-food resteraunt is between home and where-ever you are headed. You are about to have a very clean car.

Problem: Your kids have just figured out the trigger on your Wetjet, and the entire bottle of cleaner is now in a pool on the floor.
Con: You have little wet footprints through the house, cleaner on the floor, and you're going to have to clean it up, because you don't want little hands in floor cleaner.
Bright side: You are about to have a very, very clean floor.

Baby steps

Joey is in the bathroom, using the potty. He did not inform me before going. He managed to pull his pants down without removing them completely. He is in there singing Signing Time songs, happy as a clam.

That's my boy.

Reflections

NIksmom from Maternal Instincts has bestowed upon me the Blogger Reflection Award. The award “should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy… of knowing them and being blessed by them.”

Knowing that I would make anyone feel like that is humbling, but also makes me happy. It was why i started blogging- to help other parents understand they are not alone, it's not just them, and it is OK to be human while raising your kids, especially kids with special needs, and specifically autism. I was taken aback by how many of our local families were so completely emotionally overwhelmed, physically overwhelmed, and feeling like they were people unworthy of help and support. It doesn't take too many people walking up to you and telling you what a rotten parent you are because your kid is {insert coping behavior here} before you wonder- how many other people think this? Are they right? Am I doing this all wrong? After all, I don't see anybody else's kid {insert coping behavior here.}


Here are the rules for this one:
1. Copy this post (meaning the rules).
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site.

Hmmmmmm...
This is hard, because I just hit up eight people for another meme. The idea behind this one is basically "five sites that make you feel supported and encouraged and why."
That would be the entire Autism Hub. That is, after all, why I joined. But I seriously doubt everyone on the Hub would be very happy with me if I tagged everybody on the Hub- though I certainly would be interested in knowing which blogs other people found helpful and supportive. We could all use a back-patting break, too. It can be lots of fun to let others know how much you like them. Try it, you'll see what I mean. Never miss an opportunity.

So I'll take these as the top five blogs I read when I am feeling down, and need that little lift in life (kind of like Christina's couch):

McEwen's Whitterer on Autism. There is nothing quite like knowing your house isn't the only one where "goldfish crackers" is a food group. Knowing that we're not the only ones blessed with reverse grammar, and understand it, or that phrases echoed may be only hints at what is being said. Her boys seem so much like my Joey, an I pray he is doing that well when he gets to be their age. Additionally, I get a glimpse of the world of "special needs sibling" and the issues Andy may face as he also grows and becomes more aware. Grace, dignity, and humor infuse the world of raising children, especially children with autism, and the quirks and questions which come with the territory. I read her blog first thing in the morning. I read it last thing at night. And if the day is hard, I've been known to open it up and read it if I get any moment during the day to do so.

Monkeygirl at Musings of a Highly Trained Monkey. Monkeygirl is an ER nurse, and her blog is mostly about life in the ER. I started reading her because Dr. Flea recommended the site. Dr. Flea's blog is sadly no more, but he had great taste in blogs. Monkeygirl's commentary is a reminder to remain sane in the face of insanity, a reminder to buck up and do the needful, and no matter what happens to me today, at least I'm not a complete idiot. Land whale, yes. Idiot, not yet. I promise, Monkeygirl, I am not allergic to NSAIDs.

Stimey at Stimeyland. OK, I admit it- I started reading Stimey's blog because she started leaving kind comments here, and then I discovered she is my age, and has a child named "Quinn." Seriously. I love that name. But the blog is a series of glimpses into living with kids- and a good reminder that kids are kids, no matter their "issues." Besides, she's funny. ;)

Evan at Kiribako. Evan and I have been friends for a very, very long time. His worldand he sees it is definitely worth reading about. It always reminds me that I'm not the only one who sees things on a different slant from the norm, and that sometimes "normality" is completely nonsensical. Also, Evan tends to see and be interested in details of existance that I find fascinating, and wish I knew more about. He also reads interesting books I never get time to read.

And finally, Club 166. Sorry, Joe, but there it is. Club 166 is another parent slogging through the school system, with some realy good advice for getting through IEP meetings and practical problems. If you want some solid, grounded, clearly written views on raising kids and maneuvering through the joys of special ed, go read Club 166. This is a guy who puts some thought into how to be a good parent to and advocate for his children. Let us go and do likewise.


I skipped Niksmom because she tagged me in the first place. I could definitely list more, but then we'd run outof people to tag. I know this is a parent-blog heavy list, which may irk some people, but when you're in the trenches of parenting, often it is knowing you're not alone that means the most, and gets you out of the rut.

Highs and lows

Yes, here we are, on the roller-coaster of parenting. Gotta love it.

We had a level 7 today. Something's up. I need to get my otoscope working.

On the other hand, he ate meatloaf for me yesterday, and ate a PB&J- without taking it apart- today. What's up with that?

The way Joey moves forward, sometimes the move ahead in one area leaves him overloaded somewhere else. We're hoping that the reason the meltdowns result is because I am doing something wrong in not picking up on the processing and overload. After all, I can fix a problem with me.

The meltdown today was over a doorknob. The knob to the basement, which is Joey's therapy room, sometimes comes off, because I'm an idiot and can't figure out how to keep the screws tight. No other doorknob does this, so I'm a bit at a loss over it. Anyway, it came off, and I couldn't take care of it right that instant. That would not do. The minute I was able to secure his safety, run down the stairs, get the knob, and put the contraption back together- like a light switch, it was over. The world righted itself. I have no idea why the doorknob was suddenly so important, but it was, so there we are. Next time, I need to move faster.

Level 10

The word "meltdown" has become a commonly batted about term in the parenting world, yet with widely divergent meanings. A meltdown can be anything from a very loud whine at an inopportune moment to a screeching ball of violent nerves quivering on the floor. Things that other parents consider to be "meltdowns" I don't even hear anymore- or more precisely, I see the causes quicker, and thus can move to diffuse the situation rather than just assuming the kid is a freak and escalating it.

Now, I can't say that I am some master of diffusion. Meltdowns, by their nature, tend to escalate. If we as parents think meltdowns are scary and nerve-wracking, try having one. But what most people label as "meltdown" isn't even close to what I would consider one. Disappointed children who pout when they don't get their way aren't melting down. A tired child who starts to cry when you want to do just one more errand is not melting down. A child throwing a little temper tantrum over not getting the latest Transformer toy is (usually) not melting down.

For our house, "melt down" is a term that is reserved for a situation that involves a great deal of screaming. They are almost always connected with frustration. One is not "melting down" until one is no longer functional. A Level One meltdown is when a frustrated child gets into my face and empties his lungs (sorry, all boys here), so that he is unable to complete the current task. Nothing elseis happening, just the screaming, that very loud alarm of "I cannot do this right now, I don't know why." A Level 10 involves injury to all and sundry within crashing distance of the child's body. This is the very loud alarm of "I cannot deal with existance as it is right now, leave me alone." All meltdowns require a great deal of patience. The child cannot seem to end them himself; there are a whole bag of methods to help de-escalate and calm the child, and you may need every single one to restore calm enough for the child to re-engage their own coping and equilibrium mechanisms.

This time last year, we were still in almost-daily meltdown, usually Levels 1-3. Summer has always been particularly bad since he started school. We never had them before he started school, because we just adjusted the whole world to him without even thinking much about it. Sensory overload was rare, and when Joey did make a peep, we jumped. I could take him almost anywhere when he was a baby. Joey tended to be under-sensitive rather than over-sensitive. HIgh pain tolerance. Hates dark rooms, loves super-bright ones. That sort of thing. Also, the lack of communication skills meant that I often understood and adjusted to/for him, but he really couldn't tell people around him what was going on. Anyway, summer is bad news for the ears and the nerves. The wild changes of routine, the long daylight, the heat... all big no-nos for sanity around here. We've mostly headed off the worst of it this summer by having him in programs, getting him into routines, and now with school. He's stayed pretty focused and been able to really enjoy activities and be able to talk about what is going on around him. Celebration times! I need more champagne. :) There are still times he melts down, but for the most part, I can track what the antecedents were, and can see them coming, so can brace for intervention.

Joey had a Level 8 today. I am in the middle of tracking down what exacly happened. I mean, I can tell you the immediate trigger, and I've tracked down a good many of the small events that fed into the situation, but bigger meltdowns can sometimes be tricky, and are almost always a shock. Was this just an accumulation of small irritants, or did something happen that I need to know, say, at school? Did all the shifts and changes just overwhelm him, or was there a sensory issue with the heat that took him over an edge, or is there a bigger problem that needs to be addressed? My jaw would like to know.

Fortunately, this occured at the therapists' office. For one, that meant the moms who were there were interested in helping, and understood what was going on. None of them had ever seen Joey go into meltdown before, so they were taken aback, but all the moms had kids that melt down more readily than Joey, so they knew what it was. For two, the OT could intervene immediately. Once the worst was over, we got Joey some deep pressure and other input that was calming, with the good equipment (bug hugs and big exercise balls are good things).

Now that it's over, the detective work goes into full swing. What happened? How can I help him pull out of the spiral? What did I do wrong that resulted in such explosive escalation? But this work gets easier- or at least faster- with practice. You start knowing hat questions to ask, what clues to consider, which people to talk to. You become an expert, like any other endeavor, and thus make more headway in less time. With good luck, I will find all the peices and be able to sort out the bigger picture, so that I can intervene and help before the child goes into overload and explodes.

A long, long talk with another mom

My best friend is a lady who lives down the street with three hydrocephalic boys. I’ve mentioned her before. And whenever I am feeling particularly beat up, my butt usually ends up on her couch. Needless to say, we had a long talk this morning- about yesterday.

Being a “special needs parent” is not like being another kind of parent. Apparently there are people here who don’t know that, or don’t want it to be a reality. But it is. Parents who do not have special needs kids really and truly have no idea what it is like to have a special needs kid, or what it is like to be a special needs parent. Most parents are living it up in Italy, and we’re over here in Holland- or, probably more properly, India.

I love India. No, the real India, I mean. I spent three months there, and a separate three-week trip before that. I wish I had been there longer. I’ve never been to the real Holland, but I’ve been to Belgium and Germany, both of which are spotlessly clean, at least in the tourist districts. They are beautiful, wonderful places… but clean. Very, very clean. And in many ways, very like places in the US.

India is a whole new world. There is dirt, grime, heat, poverty, cows, beggars… the whole crunch of human life. Clean water comes in bottles. The hotel room uses a geyser for hot water, and it only will heat a couple gallons at a time, and then you use a bucket and cup to actually take the shower. Air conditioning is a rarity- as is refrigeration. In the villages, you’re lucky to have running water, and you have electricity for only a few hours a day (and not consecutive hours). Paved roads are a city “thing,” motor-rickshaw is the transport of choice, and cows have the right-of-way. Living in India when you expect the standards of US living is a really big challenge.


If you spend your entire trip in India focusing on these challenges and wishing you were in an international hotel, you really miss the wonders that are India. You would miss sitting on the far side of Sanchi Stupa 2, in the breeze, with the scent of ashoka blossoms and the plateau stretched out below you. You would never see a shrine in the middle of road, draped in orange and yellow garlands and filled with carnations, while incense and the ringing of bells fill the air. No one would be able to run up to you from the local temple and offer you prasad, or ask you to hold their baby while they take a photo. You would never see the lights of navaratri or the colors of a fruit market, stacked high in the morning. You’ll never share lunch with a troop of monkeys. If you don’t go into that cave that smells of bat dung, you will never see the paintings of Ajanta.

At the same time, what’s so wrong about sometimes wishing you could stay at an international hotel and have a nice, gourmet dinner? Or just be homesick, wishing we were in a comfy living room with a TV, wearing our favorite pajamas? Our problem is whenever someone here mentions being homesick, we’re told that India is a beautiful place, it’s where we are, and we shouldn’t “be that way.“ The Dutch and Indians often have no idea why Italy is such a big deal, and get insulted when someone wishes they had seen the Sistine Ceiling. Did these people never wish they had won the lottery? Never wonder what life would be like if they lived in a different house? Have they never seen the Monty Python skit about the accountant who wants to tame lions? But we, as parents, are not permitted to be homesick. We aren’t allowed to wonder about dreams we once had, or mourn their loss. After all, we’re moms and dads. We’re not supposed to be human…

Meanwhile, my long talk with my friend…

We “forget” that our kids are “disabled.” This is just who they are. When you live in India, India is normal, and you spend weeks on end not even thinking about Italy. Our kids wouldn’t be who they are if they were not disabled. On the other hand, they wouldn’t need the help and support for the rest of their lives, either. Joey could play with the other kids instead of spending whole days in therapy-- basically, in school. For those of you who have forgotten, most kids like vacation a LOT better than school. But then, most kids don’t scream bloody murder when they are served their spaghetti in a blue bowl instead of a red one, or when they have to go to the park instead of the pool. They can swallow their food without being taught to do so.

My friend is sometimes sad when she sees kids walking down the street, hand in hand with their mom. Her kids will never walk down the street. She will probably never know the feeling of having her children tell her “I love you.” She doesn’t dwell on it. Her children are not a burden to her, she takes pride in every little accomplishment they achieve, she loves them and supports them. We trade phone calls: “Max sat up by himself today!” “Great! Joey answered a question today!” “HOORAY!” They are our children. But there are those moments when we are reminded that life was going to be so different. We were going to have jobs, spend afternoons in the park, go for spontaneous trips to the zoo or the grocery store. It would be nice to be able to join the other parents down at the local eatery for a beer now and again. Just now and again. According to many folks who emailed me, having such thoughts and moments make us anything from mean, horrible parents to outright evil people who should give up our kids to the State for foster care. Our lives are not as scrubbed and tidy as Holland. Should I wish it were?

The real world really has dirt, and poverty, and heat, and irritation, and inconvenience. It is beautiful, anyway.

Repost: Time

From last summer.

Allan and I came up with this, and are seeing if it starts making its way around the world as a chain email:


You need to be taking more time for yourself when:

Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.

Gone

Yep, as expected, my last post was clearly taken as I feared it would be. So I'm just going to take a break for a while, I think. Parents are not permitted to be frustrated, and I find that insanely frustrating. TO TEARS FRUSTRATING.

Tagged!

Wow, I got tagged! I get to do a meme! You know, someday, I may not be excited about this... but today, woo-hoo!

The rules:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I was tagged by McEwen, the Goldfish Queen.

Now, for some random facts:

8 things that most people don’t know about me:

1. My grandmother was a pretty popular wildlife ("Duck Art") painter in the 1960's-1980's, Marie Conway. I have her paintings all over the house. The random fact is actually that I wish I could paint.

2. I have an ushnisha. An ushnisha is a cranial pertrubance on a Buddha. Originally in art, Buddhas were shown with their hair in a bun or tied up, to reference his life as prince. However, it later became simply an enlargement of his head. I have a very small one. I was born with it. My mom was told it was an "old wound." No, she did not have an amnio. I expect to be a Buddha in about 15 lifetimes. See you then!

3. My favorite beverage is Fresca. I really liked the fancy cherry Fresca, too, but they don't sell it around here anymore. My other favorite drink is Almond Smash. I don't think they make that anymore, either.

4. I can snap my toes.

5. I do not like dogs. I do not know why.

6. I like to do ballroom dancing. I was pretty good at it when I was in grad school. My brother taught me to waltz when we were young, and I was fascinated ever since, then finally took classes. The problem is, the only guy I really want to dance with doesn't like ballroom dancing.

7. I have a PhD in South Asian art history. Even I forget sometimes. One of the school admin people calls me "Dr." and I always turn and look around to see who else he is talking to. I think he finds this amusing. I actually have two master's degrees. I do some adjuncting, but I've been doing it for so long, that's not much of a reminder (you don't need a PhD to adjunct). I prefer teaching in person to online, but most of my classes are online because of the therapy schedule.

8. I am a Tolkien affectionada. Yes, we have the full set of the books Christopher Tolkien put out of Tolkien's notes and unfinished work. I like the Silmarillon better than the Lord of the Rings proper, though I usually just think of all of the books as a single narrative cycle. I like the movies, but hate what they did with Faramir, and the part where Frodo sends Sam away- both completely miss the point of the storylines. I could go on... and on... and on... I'd start a blog, but I'm sure there are plenty of Tolkien blogs out there already, and I already blog too much.

Who would I like to have 8 random facts about? Hmmmm...

abfh is a fascinating person who always comes up with observations about her own life and experience that give me some insights into possibilities for Joey's view of the world. I'd like to know more about her.
Club166. I know he's busy, but I'm sure he'll get to it when he gets a minute.
Evan. I always want to know more things about Evan. Besides, he'll come up with super-fascinating facts, even if he doesn't think they are.
Zoomy needs more to do while we mourn for the Bridge. Besides, he's such a sweetie!
Niksmom is a very interesting lady, and she has such a wonderful blog. I could just hug the stuffing out of Nik, he is so cute! (Edited because I just realized I mis-spelled "Nik". :P )
Stimey leaves lots of nice comments, so I want to know more about her, too.
Vab (Autista) also leaves lots of nice comments that have piqued my interest. Another nice blog, too.
Kristina (Autism Vox), as if she doesn't have enough to do and doesn't blog constantly (gotta love a blog that often has several posts every day to read! Thank you!).

I didn't hit up MonkeyGirl because she just did this one not that long ago. But I always find her interesting, too. ;)

And I should mention that I don't mind if people I tagged don't feel like doing this and don't. But do know you're being thought of. :)

Clams

In another big banner, get out the prize box, chocolates all-round, where's the champagne day (We're on a streak! Look out, world!) we have added a new food to the diet. I would not say that Joey is a complete neophobe like Whitterer's guys, but food is something of an issue. Let's just say I never intended to raise my kid on mac and cheese, chicken nuggets, and hot dogs, but we seem to eat an awful lot of them around here. And I should have bought stock in Pepperidge Farm. At any rate, adding a new food is big news around here.

The food is fried clams.

No idea why. I mean, I like fried clams. I like steamers, too, come to think of it. But of all the strange-texture, weirdo-foods to suddenly decide to eat... fried clams? What gives? But I'll take it. New food!!! Schwan's makes lovely fried clams that you actually can bake in the oven. WE also invest in Schwan's hot dogs, they are better than ANYTHING you can get in a grocery (a LOT less greasy). We don't have a Schwan delivery person in town, but they do stop at Mom's, so every other week I'm on the phone now... "Yes, Mom, we need a box of hot dogs, a box of quesadillas, a bag of potstickers..." and now I can add "and a box of clams!" (The quesadillas and the potstickers are for me. We haven't gotten the boys to brave those, yet).

Woo-hoo!!! What a week I'm having! May everyone have weeks like this!!!

What Joey Did Today

We had a teaching moment today. Joey has been running out of doors, and today he managed to unlock Grandma's door and run outside. Fortunately, Grandma lives in the middle of nowhere, but in the house I grew up in, so he couldn't get too lost, even if he ran REALLY FAST- but he just wanted to go open and close the car doors. While he was wandering about, though, he managed to pull on Grandma's calla lily, and break it off. I found him slamming a car door with the stalk in his hand.

I managed to remain calm. After all, its just a plant, not a disaster, but I expressed my displeasure and dismay in the situation, and explained that he would have to go inside and explain to Grandma what he had done. Grandma made an excellent show of displeasure and disappointment, and we explained to him that breaking plants and touching other people's things and whatnot was wrong. We talked about the fact that Grandma had planted the plant, and was waiting all summer to see th eflower, and now she never would see it, because the plant was broken. We discussed the fact that when you break a plant, it dies, and can't flower or be green and pretty, but will instead get yellow and go away. We explained that saying sorry wasn't going to bring the plant back, and wasn't going to fix it, and that sorry meant that you wish you had not done something wrong. He seemed to get it- at least that we were upset, and he said he was "sorry about the plants." This was a pretty big jump, for him to at least connect the words to teh apology- he didn't just say "I'm sorry, Grandma" but "I'm sorry about the plants."

So, trying to pretend we weren't celebrating the advance in language use, we went home. There was more discussion about responsibility, and not switching to "Andy broke the plant", and how important it was for him to tell the truth and say that he broke the plant, and that sort of thing. He kept perseverating on the subject, so we kept working through it. Finally I got the music on (its also good not to dwell too long on such things, so that he will learn we still love him, and that no one is angry or upset forever), and we got home. Allan came down the stairs.

"Joey, tell Daddy what you did today," I said. I kept my tone even, because I didn't want to give him a huge prompt for what to say; we are tryign to teach him to self-narrate, and so far, we've washed out. Joey's usual response to this request, put in any fashion (What did you do today? How was school today? Where have you been this morning? Did you do anything fun today? etc) is to pretend we don't exist. Other requests, he'll at least turn his head or try to answer (even if the words that come out have nothing to do with what you asked), but this idea of constructing his own narrative completely shuts him down. Lately we've started to get some attempts at response, but mostly echoes and responses that have nothing to do with the past, with actions or activities, or anything vaguely resembling a response to the actual request. The closest we've been getting is "Joey's in the white car!" which is true, and kind of on topic, so we've been praising it.

"I went to see Grandma... " Joy! Jubiliation! Get out the champagne! Call the neighbors! Call Grandma! Chocolate and prize box for all! "...and I broke the plant. I'm sorry about the plant."

My son just told his father what he did today. He answered an open-ended question requesting narrative about past activities. He remembered he broke the plant, and told his father.

Holy frijoles!

The Money Wars

Another article for your consideration: Who Pays for Special Ed?

Don't forget to peruse the comments. Unless you have high blood pressure, in which case I suggest you avoid them.

My thoughts: hurrah for this family, getting the services that is their child's right. No, let me say that again. They are his RIGHT. Just as my lovely little Andy has a right to a free, appropriate public education, so does my Joey. And so does Luke. Until people understand that letting a child rot is NOT appropriate in ANY circumstance, our entire society suffers. Until people who do not have special needs kids really understand what "special needs" means, and what education is about, there will be ignorant idiots who declare that paying for children such as Luke and Joey are a waste of money. And those ignorant idiots will continue to put up my blood pressure.

Charms

I got a call from Joey's new summer teacher today. I was pleased to find her proactive enough to call and want to talk about Joey. I had made a powerpoint to use at his IEP meeting, and she had a copy of that, but wanted to be sure there was nothing else she should know. I mentioned a few things, like the ASL and that if he's having trouble, I need to know, and I was happy to answer questions or help. She seems like a very nice lady. She's training to be the future autism teacher in the lower elementary.

I joined a gym. Partly because for the price of preschool, I get the opportunity to hae 2 hours of childcare twice per day. That's four hours, whenever i want (and can use it). They also have a nice kid's pool with sprinklers and stuff. And Mom is buying it for me, because she's a cool Grandma like that. It's been a big hit. Joey and Andy have been having a ball while I get some exercise in, and then splashing the pool together. Since I go in the morning, and they have lots of adults to help with the kids, the kid room has kind of "assigned" a staff member to stick with and shadow Joey, and that has worked out beautifully- and wthout me really requesting it (I just warned them that he is autistic.) He's been loving it there. But I had to tel them that he was going back to school, and they at least acted very sad.

That is one of Joey's great strengths- he charms the people who work with him. As my Mom always says, "Joey loves the world and the world loves Joey!" I have rarely met children who exude that whole outlook the way Joey does. Joey loves living, being with people, doing and being and laughing. Everyone is his friend, and it is hard to prove otherwise. I know that eventually this may be a problem, but right now, it is a whole way of being that makes people want to help him, want to know him, want to listen to what he has to say and share and be. I will be very, very sad when he discovers he can't go through life that way. He should be able to, it should be the way the world is... but it isn't.

People remember Joey. They ask abotu Joey. They want to know Joey and see Joey and be with Joey. I've seen him charm the governor of Virginia. I'm seen him charm his teachers, his therapists, even the grumpy Sunday school teacher. He has charmed the entire Saturday church service. I think it must be because people do wish the world was like this. It is so much more pleasant when the world is full of friendly faces.

Happy July Fourth. Part 2

It is Fourth of July- and that means FIREWORKS! My boys love to watch fireworks, and talk abotu fireworks- but not listen to fireworks. Whistles and pops are not their friends. Joey spent mostof teh display with his fingers on his ears. Andy started with fingers, then tried jamming green cherry tomatoes in them, and finally hid under Grandma's chair. But would he go inside or sit on Mom's lap? NosireeBob, he wanted to see his fireworks!



Although Andy is considered "NT"- he is not autistic- he does have sensory integration dysfunction. This is not considered a disabling condition, but it seems to me that many of the "problems" we see in Joey we also see in Andy, because the cause is a problem with sensory issues. So though I don't have two autistic children, it sure can sometimes look like I do. When both kids are telling me "too loud, Mommy!" and the NT one is the one under the chair... well, it makes for an interesting Fourth of July.

Happy July Fourth

Just some thoughts on freedom...

I am free to take my autistic child into public. I can teach him hands-on how to deal with social situations, different lighting, and public spaces.

I am free to hug my boys tight. And smooch them. And poke their tummies. And tell them I love them.

I am free to get my children medical treatment wherever I want. I might have to pay for it, but I am free to do it.

I am free to drink a beer in front of my kids in my own back yard.

I am free to feed my kids healthy food and clean water.

I am free to speak and educate people who come up to me and complain about my child's behavior. I am free to discuss autism. I am free to discuss sesnory integration disorder. I am free to tell them to shut up and leave me alone.

I am free to take my children to Church. I can even go twice a week and let Joey listen to the music on Saturdays. I am free choose the church, temple, spiritual circle, or other religion and religious area or group in which my child will be raised to understand God. Or no religion at all, if I so wish. I am even free to visit religious structures and groups other than the one I belong to.

I am free to blog about my children, my life, autism, sensory integration disorder, or anything else that is on my mind.

I am free to buy milk, or anything else I need, on Sunday.

I am free to telephone my friends, from my own livingroom.

I am free to spend evenings soaking in a bathtub with lots of bubbles and a glass of wine, and any book I want to read.

I am free to drive my kids to therapy, the store, the toy store, the farm, the mountains, the beach, or anywhere else I want.

I am free to refuse to allow a gun in my home.

I am free to walk across the street and talk to my neighbors, and let my kids play with their kids, no matter who they are.

I am free to kiss my husband. Whenever I feel like it.

I am free to wear my hair any way I like, and color it bright pink if I so desire.

I am free to write emails to my representatives in government and educate them about autism and special education.

I am free to wear comfy t-shirts and jeans.

I am free to let the dishes sit in the sink, let the grass go to seed, or let the laundry pile up on the floor. I am also free to clean the dishes, cut my own grass, and fold my laundry, even if it is a day or two later than planned.

I am free to teach my kids song lyrics such as For What It's Worth, To Everything There is a Season (Turn, Turn, Turn), or even England Swings.

I am free to be me.




Not everyone on this planet is so lucky, folks.

Four Second Fury

If you have ever played Four Second Fury, you have a concept of my life. I understand that this is normal for people with small children.

The boys are outside. I have exactly four seconds to blog.

Oops, missed the opportunity. Now they are outside again. Now I have four sec

Back outside. My ac unit is hating me right now. So are the cats. But at least I have four seconds to

Sitting on the couches now. Maybe I can

Yes. Four second fury. How much can YOU type in four seconds?

Without Compare

Allan's family came by yesterday. We took them out to Wakefield, and the berry farm, and had a lovely afternoon of it. Best of all, there were no other little kids around to compare Joey to. This means that everybody just saw a happy, loving, sweet little guy, rather than the focus being on Joey's weaknesses. He was charming, cute, and adorable, as was his brother, and fun was had by all.

They seemed pretty shocked when they asked about school, and discovered he would be in a self-contained classroom. Most folks are shocked to learn this, but it seemed especially odd to them, seeing how delightful life can be with my guys. Joey was having a "good" day on top of it, so we didn't have a lot of tracking or screaming or anything that would showcase Joey's problems. Why put a happy, darling little sweetheart in a self-contained classroom?

Remember, these people are not special ed folks. They have the same ignorance of special ed, how it works, and what it is about as most people seem to have. To them, a self-contained classroom is a place where kids who are very severely disabled go. Joey is not "very severely disabled." And yes, if he had an aide, he's probably be OK in a regular classroom- but our school would rather be sued than hire a 1:1 aide. The teacher is good. So there you go.

WE went with the teacher angle. Its the easiest to explain to folks who have no clue. People tend to understand "low student" teacher ratio with excellent teacher."

A Word To Students

OK, I've been reading some rounds of blogs with mostly complaints about people who do things that sound really, really stupid when you write them out in list-form on a blog. I teach college-level courses. I shall take a break from my usual autism topic to just say; here's some tips on how to really rankle a professor...

How to Really Get Your Professor In A Bad Mood:

1. Don't show up or complete a midterm. Show up afterwards or better yet, email, saying "Oops, I forgot to take the midterm. Will this affect my grade?" Yes. Yes it will.
2. Write a long, whiney email about how much work the class is. Explain that you are working a full-time job, raising kids, and trying to do a full courseload. You'll get bonus grumpiness if the prof is an adjunct, since it is likely that they are doing the euqivalent of all this while trying to hold down three or four jobs to your one- and being paid less.
3. Ask lots and lots of questions that are clearly answered in the syllabus. For example, "When is the midterm due?" or "do we have to participate in discussions this week?" or a perennial favorite, "What chapter are we on?"
4. Write rambling, tangential posts on discussion forums in poor English, then complain when you are asked to clarify the post. Ditto for in-classroom comments. Do this a lot for lots of extra grumpiness. For extra, extra bonus, complain to the Dean about your grade.
5. MIs-spell important terms and/or names in non-timed assignments. Complain when you don't get a perfect score. More extra bonus points for complaining to the Dean.
6. "Forget" to complete the first three weeks' worth of assignments. Complain loudly about how the professor wasted your money when they advise that you withdraw from the course. More bonus points for contacting the Dean.
7. Post unprofessional, "humorous" posts on discussion forums, or make inappropriate, off-topic jokes in class. Complain when the professor points out that the post or joke is inappropriate. Complain more when the professor deletes such posts or stops calling on you. LOTS of bonus points for whining to the Dean. Even the Dean will give you bonus grumpiness.
8. Turn in a paper that is 13 pages when the assignment was 20-25 pages. Or don't cite sources or examples when the directions clearly state you need to do so. Complain that you need the course to graduate- and you need at least a C. Guess what happens if you protest to the Dean (or Department Chair)...
9. Stop coming to class. Comlain about failing same class when you return the next semester. Bonus points for having sent emails about how you needed a certain grade in the same class to transfer/get off academic probation/graduate.
10. Sign up for class with long waiting list. Drop class. Sign up for it again. Drop it. Sign up for it again. Withdraw from it. Sign up for it again. Drop it again. Sign up for it again. Fail it...
11. Complain about other students getting accomodations... when you have no disabilities. Lots and lots of extra ire for complaining to the Dean about "favoritism." More bonus grumpiness for going onto public websites like "ratemyprofessors.com" and making nasty comments about the professor being an unfair grader (and yes, there are ways to know who send those comments, people... especially if you are registered.)

Students who flunk classes because they couldn't be bothered to do the work or follow directions always makes me grumpy. Don't let it happen to you.

Inconceivable!

We've been spending a lot of time watching Signing Time around here. Rachel Coleman, whose children are the inspiration for creating the series, also wrote several interesting songs about having disabled children and thoughts about those children, which are often played (and signed) at the ends of the episodes. In one of the songs, Shine, she talks about lists of things she was told her daughter Lucy would never do- and now does. Over the three years we have had a diagnosis for Joey, we have been told by a variety of people that there are things Joey "will never do" because of autism. Mostly, these lists do more to reveal the ignorance other people have of disability generally and autism specifically, than provide any useful advice or information.

Joey may never be able to feel empathy, or recognize emotion. He may never recognize people. He may never generalize skills. He may never talk. He may never read. He may never write. He may never be able to handle change. He may never be toilet trained. He may never point, or have joint attention. He may never make friends. He may never be able to maintain relationships. He may never show emotion. He may never react appropriately to situations or emotions. He may never jump. He may never be able to focus on a task. He may never be able to self-regulate.

All of these things he either does, or is well on his way to mastering.

Sure, there are lots of "nevers" yet to be tested. He may never drive. He may never have a girlfriend. He may never get a job, or keep a job. He may never have the opportunity to go to college. He may never live independently or leave home.

Yet I have the sneaking suspicion that my response should be, as per The Princess Bride: "You keep using that word. I do not think it means what you think it means..."

Swimming in the water

We ran up to my aunt and uncle's today. They have a pool, and Joey loves pools. A big, in-ground pool. Joey was excited the whole way up. We told him he was goign to see his cousins and go swimming, and we had a joyous chorus of "Joey's swimming in the water!" all the way there. It was only an hour and half.

This is one of those days when the idea of Joey being disabled simply isn't in the equation. He simply is who he is. Yes, we had a good bit of tracking today, and that meant he didn't engage with his cousins so much, but he did enjoy seeing them. He loved being in the pool. Andy certainly had a blast hanging out with the "big boys" (the boys are actually my cousin's kids, and they are some 4 years older than Joey). The thing was, even if Joey couldn't focus on a game or fully engage with the other guys, he was having fun. He was trackign because he got worn out from all the excitement, but that is just his way. We only had one screaming fit, and that was because Joey could have stayed in the pool for the rest of life and been happy, but he was exhausted and cold and really needed to get out and get dressed. Like any little kid, he anted to keep doign what was pleasurable, despite falling asleep on his feet.

It didn't matter that he couldn't talk like other 5-year-olds. It didn't matter that he couldn't really socialize like other kids. This was his family, and he could be who he was, just as he was, and that was fine. I wish all my family was like that. Ah, wishes again...

Sometimes you pick your battles. We'll just keep taking him around to the ones who love him, and not inflict the others upon him whenever we can avoid it. He has better things to do. Life is short.

Life is good.

Things that remind you that Life is Good:

Two faces smeared with cupcake frosting- preferably bright, neon colors.
That joyous victory squeal as you pull the vinyl from the shed: "Yes, Mommy! POOL PARTY!!!"
A boy curled up in the crook of your knees.
A good-morning kiss that wakes you up- that you didn't even see coming.
Giggles from down the hall after bedtime stories are all read.
Pretending to make soda in the bath tub.
Getting in the car to the chorus of "An-muls!" knowing you're going to oblige with a trip to the petting zoo.
Tickle fights.

"I...want...soda...please!"
That first trip to see Dinosaurs at the Smithsonian.
A boy with a lollipop in each fist.
Teaching boys to play skeeball.
A big, chocolatey kiss... and you don't know where he got the chocolate.
Waking up to two boys on your bed... playing quietly.
The cheer when those boys discover your eye is open.
Watching a boy chase bumblebees in the clover- all afternoon.

Dreams of Joey and Andy

It is amazing that people expect parents to be perfect. Infallible. Paragons of virtue, wisdom, and grace.

Parents are not people. They are... moms and dads.

Joey did not have a name or word for me until he was well into being three years old. Until then, I simply was. And then, I was mom. This is perfectly fine. Joey is only five years old. But it gets old to see adults who still don't get it. You don't stop being a person when you become a parent. In some ways, you become more of one, because you gain so many new social and cultural roles.

The day you realize and understand your parents are real people- with thoughts, dreams, feelings, and and life completely seperate from your own (which existed before you!)- you stop being a child. You become an adult, with new roles.

I have a hard time describing what it is like to be a parent to people who have no children. I was the first of my circle to have children, and most of my friends, upon discovering their own pregnancies, called and asked, "What is it like to be a mom?" These same friends who had been giving me parenting advice for years suddenly looked parenthood in the face and realized they were in alien territory. People who advised me on how to get Joey or Andy to eat, stop wandering about a room during a library reading, go to bed, brush their teeth, or go to the bathroom suddenly got the epiphany that they had no idea what they were talking about. Oops.

All of these people have dreams for their children. Ideas of how to raise their children. Beliefs of how children should behave, what is socially appropriate for them, what skills they need to survive, and how those skills should be taught, practiced, and communicated. That is what parents do.

I love the essay Welcome to Holland. It is a glimpse at what it feels like to have life not go the way you thought it should, the way you were taught it would, the way things are planned, dreamed, hoped for. The best part of the essay is at the end- when you appreciate the wonders of life as it is. And yet the essay acknowledges the pain. It is not swept away in some righteous, virtuous, Stoic ideal of saying "so it is." When life takes unexpected turns, you are effected- as is everyone around you. When Joey was born, life changed. When the words "He is either profoundly deaf, profoundly autistic, or both" fell from the lips of the SLP at Mary Wash, my life was changed. My life. Why do I not have the right to mourn for that life?

My life changed. Joey's life changed. My mother's life changed. Andy's life changed. Allan's life changed. In a single moment, we entered a new world. The plane landed.

Before the plane landed, life looked like everyone else's life- we didn't know we were already on course for somewhere other than Italy. No one on that plane did. We were all busy chatting in Italian. So the shock of the change is when the plane lands.

Personally, I have never really been sad about the "might have been" for Joey. He didn't really change; I did. He is still Joey, just Joey with a lot more help than I would have otherwise known to get for him. I do wish his challenges were not so great. I wish people who are supposed to be helping him would actually do so. I don't remember what dreams I had for Joey before we realized autism was a part of our lives. I hope they were what they are now- a drive to help him develop his talents, enjoy his life, and be happy. Right now, i'm not sure entirely what that will entail, because I have to listen close and watch close to see what he wants for himself, and to see what develops. Same for Andy. Actually, what they want right now is to have cookies for dinner and chocolate on immediate stand-by, 24 hours a day. It is my job to guide them to more appropriate joys and talents. In order to do that, I have to have some idea what those are.

I have been sad for the "where I was going." My life. Remember me? I'm still a human being. I would very much have liked to spend my life with my boys lounging at the Ganges View with lemon Mirindas all-round, pondering the mysteries of ancient India while enjoying the laughter of little boys. But folks, the liklihood of me landing the career path that would have allowed this is now exactly Nil. That is the reality. I have to change course, think up new dreams. But I still think about that one. I'll get these boys to India, but I doubt they'll be very young when I do so. Or that it will happen very often. Economics remains a major factor in reality.

And while I'm here in an insomniac ramble, I want to go back pick up the thread of the word "understand." Knowing something is very different from understanding it. Most kids know that their parents are people. They don't understand that parents are people.

Joey and Andy are learning ASL. We often make a game of quizzing each other on the signs, and they are both pretty good at it. They can tell me the meaning of almost every sign I throw at them (which is admittedly limited to the signs we have covered on our DVDs). Joey's favorite sign is fox. Andy's favorite sign is candy.

Andy knows the sign for candy. He thinks its funny to twist his finger on his cheek It tickles. If I say, "show me 'candy'!" he will make the sign. When I show him teh sign he pipes up, "candy!"

But today he understood the sign. Joey came out of therapy with a lollipop. Andy wanted one. So I asked him to sign what he wanted. He looked at me lie i was a crazy person. I asked him if he wanted candy, and he automatically said yes... and then I held up a lollipop, unwrapped it, held it out to him, and signed and said, "candy." You could see the little lights switch on. He popped it in his mouth. He squealed, pulled it out, signed and squealed "Candy!" and got excited. He got it. He understood. He knew the sign and what it meant before- but now, with the candy in his mouth, he understood. Candy!

Surprise problem

This was a morning I was so glad we have the new locks.

White Car (our van) is in the garage being fixed, so we are temporariy in our old red Jeep to get around. Usually Joey is begging to "go in the Red Car" because he loves red, so I didn't worry too much. We also have Green Car, which is the car Allan takes to work.

Yesterday we played a little bit of musical cars because of the drum lesson timing, which is also on a new day (see what is coming yet?) So Joey and I ended up coming home in Green Car.

This morning, I was awakened by a wail... "Green Car gone!!!!" Rememebr, Green Car is the car Allan uses to go to work- and he went to work this morning. So we talked about Daddy going to work, but that made it worse- now he started to wail, "Daddy's gone! Daddy? Where are you?"

Andy was still sleeping, so I got Joey into his clothes, and then went to go put on clothes myself. Andy woke up, so I had to stop and put him together, too.

We came downstairs to find Joey with his shoes on (hey! Look! He put his shoes on all by himself!) pulling on the back door (the lock we just changed) sniffing about "Green Car! I want my Green Car!"

Poor little guy. Start of summer has his schedule all topsy-turvey. So I'm hugging him lots this morning.

Sequencing

Joey is learning sequencing. He has a difficult time with sequencing as a general skill. The idea of something happening first, then the next thing happening, and then there being a result or conclusion is something he finds either uninteresting or challenging. Unless...

I had to go to the big IEP for Kindergarten a bit ago. Grandma watched the boys. Joey has been having a lot of trouble with me leaving the house without him, so this was a Big Deal for Grandma to have to watch them. There was nothing else for it. Off I went, and home I came.

Joey spent the couple of hours plotting. When I left, he screamed his head off for 45 minutes. Grandma explained to Joey that I had gone to school to talk with his teacher about kindergarten, and that I would be home soon. The screaming gave way to the plotting. There was a black truck parked across the street; he could see it through his favorite window.

"We get in the black car. We go to school and see Miss Kaila and Mommy."

There we go. Three-step sequencing.

Joey can escape from the house if the key is in reach, and has done it. This requires going to the door, turning the key, then walking out of the house. Three-step sequencing.

But he cannot tell you what he did yesterday, or what will happen tomorrow. Taking three related pictures and put them in order? Forget it. He can pick up random things in a story, but cannot retell it.

He can recite the entire Silly Pizza Song and gets upset if you get the foods out of order, but has trouble completing simple "obstacle courses" for his OT (though he is improving!)

How does one communicate the concept of first- second- third?

Sequencing may not appear to be a "critical life skill." After all, who cares if you know the order of a story, the teacher can read it to you? But sequencing is about learning conclusions and consequences. I get hungry. I eat food. I am not hungry anymore (or, I have energy to go play.) Doesn't seem like a big deal unless the sequencing is a problem, and then connecting eating to staying alive and having energy gets missed. Or how about, I want something across the road, I run out into the road, I get hit by a car?

At our next IEP meeting, I am again going to have goals flagged as "critical life skills." It makes it easier to get ESY if flagged goals are not mastered, and it lets the school folks know what skills I find important. The sequencing goal is definitely getting flagged.

Just a little update

Busy busy busy here... Andy is potty training. I am running around after him with the paper towels today- we're wearing our underwear!

And they are spending the day watching Signing Time, so we're practicing our signs. Joey only takes a couple of viewings before he has it, or at least the idea of it. Our OT was excited because signing requires bilateral coordination and some motor planning- so it takes him a little longer to be able to do the sing, but he understands it almost right away.

Fun fun fun!

Theory of Mind: What is this rot?

The topic of "theory of mind' has been popping up in all sorts of odd places for me- particularly the idea that autistic people don't have it. Either I don't get what "theory of mind" is, or the idea that autistics don't have it is a lot of rot.

In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.

Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response. Kind of like Joey having a hard time accessing words spontaneously, and so he has a great deal of trouble with communication and expressive language. He copes with this by scripting, or quoting like Mrs. Who. Sometimes he accesses something other than what was intended, resulting in words that make no sense; or he can access nothing at all, resulting in either silence or frustrated squealing (or other noise).

In other words, Joey seems to have no trouble understanding that other people are, in fact, people. He is very sensitive to emotional states- especially mine. He certainly understands that other people do not feel and think the same way he does. And he's only 5, and I've had evidence of this for a while.

People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate. Joey's private speech therapist has been very apologetic since she started Joey on ASL, because it became immediately apparent that Joey understood a lot more of what was being said- and what he wanted to say- than she had been giving him credit for. With teh visual cues, Joey can circumvent some of the auditory processing and instead use his visual processing- and so can better understand what is expected of him and what is being said to him. He can also access his words better and faster.

Before Joey had use of words, even signs, we knew what he wanted and needed much of the time. We could certainly tell if he was happy or unhappy, if he liked anothe person or not, that sort of thing. We had communication with him, and he understood to communicate with us- just not in the "usual" ways.

Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.

Joey gets the idea of people. When Andy hurts himself, he's quick with that hug and kiss- always was. When Mom is nervous abotu an IEP meeting, he gets upset, too, and lots more cuddly (and clingy). When we're all happy, he's all smiles. He wants to make people around him feel happy. When he laughs inappropriately, he's still reacting, and even usually seems to know that laughter isn't what he intended. He's got the idea that other people have minds.

I have no idea yet if he knows those minds aren't like his.

Parking

On the advice of our doc, we got a disabled parking placard. This is a little peice of plastic that looks like a do-not-disturb doorknob sign, and it allows us to park in disability parking spots when we have Joey with us. I've been putting off getting it. Joey doesn't have trouble with actual mechanics of walking- at least, not enough to prevent him from crossing a parking lot. With the increase in bolting, the doctor thought we should go ahead and get one, though, because some places around here only have off-street parking for disabled persons. Getting Joey in and out of a car in a lot, instead of on the street, is far, far safer, especially if the place is unknown or not well-known.

We used it for the first time yesterday. We took the bairns to the mountains. It's a nice ride, and Skyline Drive is so pretty. Joey was a little overwhelmed by the views, but Andy liked it, especially if a bird flew out over the valley. We stopped for lunch, and the lot was full- except the disabled spots. We added up our situation: strange place with busy parking lot, lots of people, no other spots available anyway, spot available almost at door. We whipped out our new placard and parked.


It was amazing.

Normally in such a situation, getting out of the car would have been a carefully orchestrated set of events intended to keep Joey tethered to one of us while the other wrestled Andy out of his harness. We then do a careful hand-in-hand dance across the tarmac hoping that wriggling fingers don't break free and suddenly have a boy in front of a moving vehicle, or worse, have a child melt down.

Not this time. We pulled into the spot, and herded the boys almost directly onto the sidewalk, away from cars. Then we went smoothly into the building. Coming out was even better. Out the door and into the car. No tarmac-crossing necessary. No danger of stepping in front of cars. No worries about getting halfway to the car and losing a child to wriggling or melting. No problemo.

Today I took them to Maymont. I used the magic of disabled parking again. The disabled spots are right in front of a little path enclosed by shrubbery right down to the door. No steps to trip on. No crossing in front of traffic. I can't BELIEVE how much safer this is. I'm just flabbergasted.

I won't need it in common places like the grocery store, because I park next to the carts, since Joey prefers to ride safely enclosed in a cart. But in unfamiliar lots... what a lifesaver!