Saturday, August 02, 2008

Saturday Night Retrospective

Friday, August 01, 2008

Tensions: What is A Meltdown? (A ramble)

Good ol' abfh. She gives me so much to blog about.

There is a sort of tension that runs through the "autism community" between autistic people and parents who are raising autistic people. Often this tension is constructive in its way. Most "autism parents" don't have autism, and they are working hard to understand how to best support and work with their children. Hearing from people who actually have autism is a huge help in trying to consider the way autistic people see and experience the world, the consequences of decisions made on a child's behalf. How does one advocate effectively and respectfully?

In our latest episode, abfh takes on the term "meltdown." It is, indeed, a term that causes consternation, because it is, in its essence, a negative term for a negative situation. In the comments, I noticed that commenters were concerned about the definition of the term. Abfh is concerned that a normal child's whining or tantrum is viewed differently than one had by an autistic child. These are very valid concerns, and ones that can very well feed into a stereotype of autism causing violence. However, I found abfh's example to be way off- feeding into the idea that parents of autistic kids are "faking it", that their lives are no different from other parents, if they would just suck it up and see their autistic kids in the same light as their non-autistic children.

In other words, if we're tired and drained and feeling depressed and having trouble raising our disabled kids, it is... see it coming?... our own damn fault.

Now, this ain't no pity party. This isn't about oh poor me I have an autistic child and life sucks. Because I don't feel that way. Life is great. My boys are beautiful. Unique and beautiful.

Joey is not a violent person. He's very laid back, easy going. Andy is my loose cannon. I would have to say, anecdotally, that non-autistic people, especially those with sensory issues, are more likely to be violent than non-autistic people, even when both persons are generally described as peaceful, well-behaved kids. When I hear that all-too-familiar "crack" sound in the back seat, I can lay my money on who hit whom with a better than 50/50 odds.

However, situations are very different. Joey tends to be unexpectedly explosive. He got frustrated with a task last week and struck his aide. If a non-autistic child struck a teacher, they would be suspended. Why wasn't Joey? By understanding his frustration and his problems with impulse control, focus, language, and frustration tolerance, are we contributing to a stereotype of violence?

How about we take another look at the mom in the grocery store? I know this scenario quite well. One child is autistic, the other one isn't. If Joey gets overwhelmed, we have a meltdown (or used to). If Andy whines about wanting a toy, we call that a whinefest. What is the difference?

Any child who is hitting (themselves or others), biting (themselves or others), flailing, tossing their bodies into walls (or floors, or furniture, or people), and/or smacking their heads against surfaces (or people), usually while screaming (but not always) is having a meltdown. I don't care what triggered the behavior. I don't care if the person is autistic, not, or from another planet. The complete loss of functionality and control is, for us, the very mark and essence of a meltdown. All sensory systems go into overload. Communication systems often shut down partially or completely. Self-regulation shuts down. Yes, folks- welcome to Chernobyl.

When Andy wants a toy, it may be loud, inconvenient, and annoying. I understand there are children who then escalate to meltdown over toys, but I have never seen it. If Andy started smacking me over a toy, biting himself, or flailing, I would leave the store immediately in order to contain the situation. If I knew he did this regularly, I would not bring him to the store- in other words, I would do for him as I would do for Joey: recognize triggers as best I could, and work to either manage them or avoid them. But he doesn't.

When Joey gets truly overwhelmed, he descends quickly into meltdown. Joey has never had severe issues in the store, but he often has difficulty with motor tasks such as dressing- a task that often lead to meltdowns when I began this blog. HE would get overwhelmed with the frustration, put his face as close as he could to mine and scream his lungs out. Unless I acted quickly, he would then proceed to bite his wrists. This is a level 3 meltdown. For us, unless it is dramatic and involves the possibility of injury, it isn't a meltdown. The screaming and loss of function is level one. Flailing is level 2. Biting is our proceeding to level 3.

When I say Joey has had a level 10 meltdown, I am talking about a dangerous situation. Our level 10s are not the worst I have heard of, but they are our worst- and they are very violent and physical situations. Yes, Joey has had level 10s in public. It has, thankfully, been a long time.

Do non-autistic kids have meltdowns? Yes. Yes they do. Do autistic kids have more? In my experience, yes, they do. Non-autistic kids do not face the kind of constant frustrations that autistic kids do, so non-autistic kids do not have the impetus to meltdown as much. Does that make autistic kids more violent? No, but it can mean more effort is needed to support these kids, to manage triggers and provide self-regulation skills, so that their frustration and anxiety levels are more comparable to non-autistic kids.

One thing I have learned- and yes, I mean that I didn't know it before- is that no person melts down without a reason. I may not know the reason, but there is one. As I am the adult, it is my job to figure out the puzzle and discover what is feeding into the child's frustration (not just the trigger). It may not be a single reason- a build up of frustrations can cause a person to act out, tantrum, or melt down. That is important information to disseminate.

The stereotype of the violent autistic is not because autistic people melt down, but because people not familiar with autism do not understand the triggers and frustrations. It looks random. Because those reasons and triggers look random, they are not managed, and so autistic people can seem to be melting down more than a non-autistic person would. I think if a non-autistic person had the same level of frustration, stress, and anxiety that many autistic people face every day, they would melt down just as much, just as often, and just as violently.

When mom goes home from the grocery store to blog about that meltdown, it is partly to gain assurance that other people's kids do this- after all, it is dramatic and often requires energetic intervention to prevent harm- to gain insights and advice about how to manage issues that may have fed into the melt down, and often to vent their own frustration about not being able to manage effectively, act quickly, or support their child enough. I know when Joey melts down, I am sure it is because I have failed as a parent. If only I had understood the signals, the warning signs, the triggers, the frustrations, then Joey wouldn't be sporting a pattern of tooth-sized bruises on his wrist. Meltdowns are scary, not just for the person melting down, but for everyone around them. It is a volcano of frustration venting the pressure.

Blogging means fewer parents melting down. After all, if we do, it really is our own fault. We have the skills and language to vent, right?

P.S.- It is, once again, School Tax Holiday. The Annual Torture he Children At The Shoe Store is tomorrow. I will keep you posted.

Thursday, July 31, 2008

Vignettes: How Far We Have Come

We sit in one of our regular venues, but not on our regular day.
"No mac and cheese today," Joey repeats for the fifteenth time as we are shown a table. "Mac and cheese on Monday."
"Yes, love," I hug him to help calm him. "They only have mac and cheese on Mondays." (this is actually true; this place has a food bar with daily "specials." Mac and cheese is Mondays.) "Let's see what else you can have."
Andy presses against Grandma, placing his feet on the wall and his back against Grandma's shoulder. No part of him actually touches the seat.
"No Mac and cheese today. No mac-a-roni and cheese."
"No, love. Here, look, read here. You can have chicken strips, or a cheeseburger..."
"CHEEEEEESEburger?" Andy croons with faux surprise.
"... or a grilled cheese sandwich. What would you like to eat?"
"Mac and cheese." He points to one of the games on teh kid menu, a word-find... with mac and cheese as one of the words to find.
"They don't have that on Thursday, honey. Would you like chicken strips?"
"Chicken strips! I want chicken strips!" Andy claps and gives Grandma's shoulder a break by flopping suddenly onto his bottom.
Joey sadly orders a grilled cheese sandwich. Andy, who usually just gets the food bar so he can have all-you-can-stuff-in-your-mouth-bacon-buffet, orders chicken strips. We get some jello and green beans from the bar to try to calm Joey while he waits for the food he doesn't really want.
It arrives, and Joey wolfs down the sandwich, though he continues to look depressed while doing it, and does it by first picking off some cheese, then nibbling the bread, then digging off more cheese...
"I want chicken," Joey announces, eyeing Andy's plate.
"You just had your lunch. That is Andys lunch," I remind him. "Do you want some salad?" Joey looks dejected.
"You want chicken?" Andy chimes. "Here, I cut you a piece." With that Andy carefully cuts a chicken strip in half, and gives the piece to Joey, who is ecstatic.
I think my mom could have cried.


There is a brightly-colored restaurant called "Joe's Crab Shack" next to one of our regular haunts. My apologies to fans of the chain, but ours really sucks. The food is bad, the service terrible, and we don't bother to go back. However, the exterior is extremely interesting and attractive to children. Adding to this charm is the fact it sports Joey's name in big, red letters all over it.
"Why don't we go there?" Joey demands, indicating the place with eyes and turned head rather than pointing.
"Yucky food!" Andy replies matter-of-factly, and without missing a beat. Yes, indeed.


We wait for Andy to come out of OT. I get on the floor and play block-building with Joey, but he can't focus all that long. He gets up and starts pretending to be a dinosaur, a t-rex, and knocks over my building. I rebuild, and he roars and knocks everything down again.
"I'm a dinosaur!" he roars, and wreaks more havoc upon my quickly-constructed village. He stomps out into the hall, roars, stomps back to repeat the catastrophe. He roars more and stomps out into the hall.
"And people keep saying autistic kids have no imagination," my mom chortles.
Rooooooaaaaaaaar stomp stomp stomp.


"What did you do in school today?" I press Joey for some conversation. He flashes me "the look", but attempts to create words, anyway. You know "the look." The "I can't believe you're going to make me work" look.
"I had fun." Ah, the canned answer.
"What did you do to have fun?" I press.
"Igisee {snork snork hiss hiss}"* he flops back, tosses his head to one side and chants to avoid the task.
"Silly boy. Tell me one thing you did today."
"I play with Mrs. Huff."
"Did you play a game?"
"Igisee {snork snork hiss hiss}!"
"Did you play a game?"
"I got a prize!" Well, he must have done something good. They don't always get prizes.
"Good job! Wow!"
"No prize today! SAAAAAWY!Sumday!**"
"No prize?"
"Igisee {snork snork hiss hiss}!"
"Did you win a prize today, Joey?"
(Suddenly with focus) "Yes! I won a prize! I win a sticker!"
"Did you win a sticker at school?"
"No. I get a sticker and Andy doesn't." Ah, He is referring to our sticker campaign.
"Yes, you are well on your way to earning a sticker. What was your prize today?"
"I played with Mrs. Huff and Mrs. Macy." This is a scripted answer. To a different question.
"Tell me one thing you did today, Joey."
"I ride bus 30!"
"Yes, you did! All the way to school! What did you do at school?"
"I had fun."
"What did you do to have fun?"
"I did bubble machine!"

Ah, the trickles of gold that fall from those lips.

*Joey often takes phrases he likes and "soundifies" them- the words themselves melt into approximation sounds, and thus lose meaning in favor of perserveration on the sounds, tones, and inflections. Reduced to nonsense sound, he then uses them to "fill" voids of sound, as oral stim, as avoidance strategies, or uses them for sensory processing or language processing stall. This particular set of sounds is from "I go to sleep!" and then the sounds of pretend snoring. My response, "silly boy", is often demanded by him ("Say, 'Silly boy!', Mommy!"), and seems to be a self-imposed cue for continuing conversation.

** "Sorry! Someday!" This is apparently a pat answer from school when he can't have something or do something, especially things he isn't old enough to have or do.

The Vaccination Question

One of the consequences of wandering all over town with a bumper sticker that says "Yes! You Can Ask Me About Autism!" is that people stop you and ask you about autism. I got another mom asking me the #1 question today: "I'm supposed to get my kids vaccinated today... what do you think? Should I do it?"

I took some time to talk with this mom, because we had some time, and she has kids in the same camp as Andy. Besides, she had chased me down from the parking lot, and the fear behind the question is one that one must take care and investigate before answering. What is she really asking?

Some are honestly asking, "Do you think vaccinations cause autism?" That is a very simple question to answer. No.

Some are asking, "Which do you fear more- these shot-prevented diseases, or autism?" That's an easy one, too. I am far more afraid of measles, mumps, rubella, meningitis, whooping cough, polio, chicken pox, hepatitis, tetanus, typhoid, pneumonia, diphtheria, and rotavirus than I am of autism. All of those diseases can kill you. I do not find autism to be frightening, other than the whole mystery of the unknown, since education about special needs in the general population is practically non-existent. Having to fight the school district? terrifying. Then I refer them back to question 1, and the fact that there is no this-or-that question here. If you are really really concerned, talk to your pediatrician about an altered schedule so you can spread out the shots and watch for side effects more effectively. High fevers can do strange things to a child's brain, and you need to watch for them. I would be more worried about seizures, though.

Some are asking, "Is autism worse than death?" This is really a slightly different question from #2. The absolute terror behind this question is something I find rattling. This is a parent paralyzed. They do not want to be blamed for their child being disabled. They don't want to roll the dice and take a chance of harming the child. They have never seen measles, mumps, or whooping cough. Polio is, to them, a distant legend. Pneumonia is a cough. Diphtheria is something they get in third-world countries. But autism... that has been very much to the fore, and the images they see in the media are not images they want projected on themselves and their children. Autism is not worse than death. It is a different way of thinking, feeling, and experiencing the world. It can result in severe disabilities, such as communication disorders (including social skill issues), sensory disorders, fine motor skill problems, and even gross motor skill issues. Not all of these issues are disabling, and there are therapies available to address these issues, if you can lay hands on therapists, time, and money. It is easier to support your autistic child than it used to be- there are more people out here like me, willing to help, there have been more trails blazed before us, there is more understanding in the educational and medical communities (though there is a lot more work to do), there are law offices who specialize in advocating for and representing autistic people and their families, than there was even ten years ago. I often invite these kinds of parents, asking this question, to come meet Joey, if he is on hand. I give them the address to this blog. I give them my handy-dandy sheet of websites to research autism and special needs issues.

And then there are some who are really asking, "What is autism?" The word is a vague shadow on the edges of information. They have no thought of not vaccinating their kids, because the vague shadows of the diseases they are protecting their kids from is still clearer than that of autism. There is curiosity, intrigue. They have heard fuzzy rumors, maybe caught a glimpse of Jenny McCarthy or seen a few minutes of Rainman, maybe they watch Eureka. This is another case of come-meet-my-kid and and a nice handout to take with them after you've talked a bit and introduced Joey. They don't want too much information- just enough to take the edge off mild curiosity.

Then there the parents asking, "Is my child autistic?" Now, I am not a developmental pediatrician. I can't diagnose kids. I do recommend that anyone worried about their kid should have that child independently screened (not by the school- by a developmental pediatrician or someone else with the credentials and ability to diagnose a child with an ASD or discount ASD.) There are kids out there who are eccentric without being autistic. Sensory integration issues can easily be SPD and not autism. There are disorders that "look like" autism, especially in young children, such as Tourette Syndrome. I always want to take some time with these parents. They are usually scared, worried, and feeling desperate and guilty. What they usually need is reassurance, a kind I don't really feel I can give (I can't give them that resounding, "No!"). A kid that looks normal to me might not be; a kid who looks really in need of service may be normal. I have no idea, I'm not trained for that. All I can say is, get the child screened, and if it comes back an ASD diagnosis, here I am to help you.

Don't be afraid. Vaccinate your children.

Tuesday, July 29, 2008

Fear Mongering

I often have a hard time sleeping at night. Sometimes I lay awake, wondering. Or I wander about the yard, worrying. Or I just freeze in those moments after the boys are in bed, pondering. I don't have time during the day, when I have boys and life is hurrying along. But in the pauses... I think about it.

What is this world I am trying to prepare Joey and Andy for?

The stories stream in from all quarters. Autistic people threatened with isolation, arrest, death. Some threatening to burn down the home of an autistic child. People who insist autism is 99% a discipline problem. Families with autistic people being tossed out of stores, planes, restaurants, schools, churches. Labels attached to autistic kids: trainwrecks. Idiots. Weirdos. Freaks.

I see it. Kids who tell Joey to go away on the playground, or who avoid him altogether. Adults who recoil from him when I explain he is autistic. This is the world I am preparing him for. How do you prepare a child from that kind of discrimination? How do you help a person grow and understand how beautiful and wonderful and special they are, when you know people all around them are going to be sending a different message?

I carefully cut the zinnias, because I know it will still be a couple of days before the boys get into the back yard now. Our afternoons are already booked with speech and OT, the mornings with camp and school. By Friday, there will be new blooms, and it's better for the plants to cut them. I place them carefully in the vase with a few roses, just to fill the vase really. I'll put them on the mantle and tell them that these are their zinnias, from their garden. Andy will get it. I don't know whether Joey will understand or not, but perhaps when we wander out Friday, he'll see the new ones. The sunflowers have their head buds on them, so we can talk about that, I can show them the sunflower buds in our book about sunflowers growing. The tomato vines are finally setting tomatoes (who ever heard of not having any tomatoes at the end of July???). I ponder a brief lesson on tomatoes and seeds, but store it away as a "just in case". It isn't likely that Joey will be able to focus on the garden long enough for a lesson. Maybe I'll do that when they start to ripen. Maybe they'll be going pink by Friday, and that will hold his attention. Focus and attention are real issues for us. We were hoping when he learned to read, he'd get interested in books, but that hasn't really happened. It's all just words to him.

The zinnias are all different colors. there is a sunny orange one, a sparkling white one, a bold red one. One is a purply pink, another a creamy cross between ivory and lemon yellow. The soft pink of the roses makes the more brash colors pop out.

Is this world going to be such a terrible, tough place for Joey? The world certainly has its violent crimsons, but isn't it mostly soft pinks, butter yellows, warm oranges? What about the ladies and the older men who see Joey in the store, and crinkle up their faces in delighted smiles, a response to his giggles and grins? What about the ladies in church who tell his classmates that God made us all as we are, and loves us all as we are, and we should love all our fellows the same way, as they are? What about the folks who, realizing Joey is different, slow down their speech and try to engage him a little more? What about the family in front of us in the awards ceremony who, seeing Joey going across the stage for his reading award, clapped enthusiastically and noted, "he must be smart, he's the only one in his class to get the award!" even though they had never laid eyes on him before? Do we notice the fear stories all the more, because they pop out of a world that is, for the most part, trying to be supportive of my child and my family?

Perhaps that is a lesson for my Joey and my Andy: always be kind. Help and kindness unlooked-for is a treasure that makes the world a better place.

Monday, July 28, 2008

Talking About Joey

One thing that happens when I go out into the world is I end up talking a lot about Joey. I think it is partly because I have a fresh set of captive-audience ears at hand, but somehow autism and Joey fall into the conversation. Sometimes people ask. Sometimes it just seems to appear in the conversation, I suspect because my brain just leans that way.

Several of my New Jersey crowd have special needs kids at various levels. How they cope it something very interesting to me. Whether therapy is left off a an inconvenience, their kids are relabeled to fit them into certain classrooms or situations, or they are out there fighting and placing their kids in various activities and placements, they all have ideas of how to cope, how to help their kids cope, how to pay the bills and have a life. They are all apparently better at this last item than I am, because they're all published and working on projects and going on with their life plans.

OK, that go off track. Back to the point. I talk a lot about Joey. I talk to people in the park. I talk to my New Jersey crowd. I talk to folks in the train station. I talk to people in McDonald's. I talk with people in the grocery store. The questions folks ask, the observations they make, the advice they want to offer, it has its ups and downs, pros and cons.

It always amazes me how many people still think autism is caused by vaccines. This idea is so entrenched in the popular imagination that when you speak against the idea, people start to argue with you. People who have no clue what they are talking about, who ten minutes before when the conversation started didn't even know autistic people can speak, relate, and show emotion, are suddenly experts at vaccines and how they cause autism. Weird.

It always amazes me how many folks are surprised when I say Joey was autistic from birth. One person this weekend even replied with a shocked, "isn't that really rare?" Well, no. Most of the studies I have seen seem to indicated it is about half-and-half based on parent observation. I have seen numbers as wide as 80% congenital and 20% regressive, which would make "from birth" far more common than regressive autism.

It always amazes me how many folks say, "wow, he doesn't look autistic!" I refrain from asking what they expected an autistic person to look like. I think the fact that Joey is happy, healthy, and affectionate really takes people off-guard. The idea of an "invisible disability" is confusing to people. It is the same attitude as the people who give us dirty looks (and the occasional rude comment) when they see us using our disability hangtag. Joey doesn't look disabled, so why should we get to use the close-in parking spots? They don't see Joey trying to dart into the street or wandering around the car, and even if they did, would that pass their personal test for who deserves a handicap tag?

But what really amazes me ifs people ask questions, listen to answers, and then ask more questions. They want to know about Joey, they want to know about autism, or they are at least polite enough not to fall asleep. There is hope out there, ready for the asking.

Sunday, July 27, 2008

Not well-read

There is a storm here in our little corner of blogland. We have lost one dear to our circle.

To be honest, I have a pretty tight little circle of blogs I read regularly. I see other peoples' blogrolls of daily reading, and I boggle at how they have the time to do all that reading. I think folks have picked up on my little circle, because whenever awards go around, I tend to bring up the same dozen blogs. I hunt and peck at other blogs, but when it comes down to it, I have my comfy dozen, those familiar comfy couches in virtual livingrooms, and there I take up my residence. I follow along those stories, think about those children, those parents, those families. Other blogs drift through, other faces, names, tales; but the focus remains on this one small circle.

Sometimes things reverberate through that little circle from those drifting names and faces. The reverberations of loss of one little boy is one of those. I wasn't particularly following Evan's story and life. I peeked in now and again, popped by when something caught the interest in some of the autism headlines sites I sometimes peruse. When I got the news from Niksmom that Evan was sick, I had to ask which blog he belonged to, I couldn't remember, I just had some connect that I had read some of his adventures.

But many of my little dozen were regular readers, followers of this family, profoundly impacted by the sudden loss. We may have never met each other, but we are friends and family all the same. I am terribly sorry that Vicki is going through this loss, I cannot imagine losing a child, but the pain must be... even the thought of it is overwhelming. What can I do from my little virtual corner than to send what hugs I can, do what I can to honor a child and a family who mean so much to so many? To put out that reminder, in my own way, that we are all precious, even people I don't really know, know only from glimpses of glimpses?

I also want to hug my little circle, who feel so much pain and very real grief in this loss.

We're thinking of all you guys: Vicki and her family, and our other blog families and friends who are hurting. Keep us informed of how we can help.

What I Learned In New Jersey

1. Going 30 hours without boys to squish really, really sucks. Well, I knew that already...

2. At least one of my colleagues has an adult sister in an institution. She's there because she's considered severely mentally retarded. Then she described her sister to me. I've never heard a more exact description of classic autism.

3. People do not understand that once a person is in an institution with a label, you might have to ask to have your loved one screened for something else if you suspect something else- they won't "just do that" or "watch for it" automatically. (If you are in the hospital with a diagnosis, and you suspect another diagnosis or problem, it is a good idea to ask the doctor about checking it out).

4. If you are the only sober person playing pool, you are probably going to win the most games. Even if you suck at pool and haven't played in years.

5. No matter what, people will complain that they aren't being paid enough and want more money. Even for a job you can work in your pajamas. And that pays you a good bit of money by the hour to work in your pajamas.

6. In Heidi by Johanna Spyri, Heidi has black hair.

7. Sam Adams costs five bucks on the train. It doubles the cost of lunch.

8. If you work a great job where all you have to do is read and keep track of others reading, and they pay you good money to do it, people will still do the stupidest crap to get fired. Such as to announce to an entire group of people doing the job, including your supervisors, that reading isn't really necessary.

9. I am not in the rumor loop. Everybody seems to know everything about everybody, and who got fired and why, and all that kind of lovely stuff, and I find out about it when I go to New Jersey. (I am not yet decided if this is a good thing or a bad thing.)

10. When you are not in the rumor loop, and you ask after the whereabouts of someone who has been fired for months, people laugh at you.

11. When you are staying at a hotel that is too cheap to keep drinks available until the end of your meeting, you don't feel as bad about keeping the pens and pads they leave in the conference rooms.

12. There is nothing better after 30 hours of boy-less-ness than being able to come home, give them a kiss, and hear the little voice say, "Mommy! You're back!"