autism – Page 2 – Michele Lee

Autism & Me: The Hardest Thing

Yesterday I talked about crashing, today let me just briefly talk about the hardest thing we’ve encountered in raising our autistic son.

He doesn’t look different.

You can tell when someone is blind, or an amputee, has Down’s Syndrome or MS or is in a wheelchair. But my son does not look abnormal.

In a way, this helps. He doesn’t encounter immediate discrimination.

But in a way it works against him. Imagine, if you will, that your child becomes more excitable/stressed any time he or she is in public, the more people, the more stress/excitement. Now, they also have oversensitivity to sound. You decide to go out to dinner at a buffet, because the kids love it and no one can decide on one thing to eat. Except the restaurant is packed. It’s loud it’s noisy, there’s at probably a hundred people all at tables in the same room…And even though your child wants to be there, has been there before and was excited when you arrived he/she is starting to have a problem behaving because there are just too many people and too much noise and your child cannot turn all that stimulation off. (This is another trademark of autism. Essentially they can’t “tune things out” like neutrotypical people can. This leads to amazing powers of observation and recollection of detail, but problems in a lot of other situations.)

They want to behave, but they just can’t because their whole world feels out of control and it’s sending their body and brain into panic mode. You try to talk, to reassure, but it’s not helping.

And the people around you begin to stare. They begin to look at you with sneers on their face. Maybe someone even butts in and tells you, “Control your kid!”

Now to hell with what other people think, but would they be as quick to complain if your child had some obvious disability? And that reaction puts more stress and you and on your child, who usually doesn’t want to misbehave.

This same principal affects how everyone deals with my son. An administrator at his first school outright told the teacher that he wasn’t really autistic, she was just handling him wrong. The same teacher had no autism training and (in my experience) seemed to think that with enough pushing he could be normal. When he had problems with school work she pushed harder. When he couldn’t do it, she assumed he was just misbehaving.

Because he doesn’t look different people always assume he is just misbehaving or being vindictive/mean rather than realizing that he may be just confused and frustrated.

For a long time we struggled to teach him that he was not a bad child. That his problems with using his words and understanding what other people wanted of him weren’t his fault. And that he could overcome them. Self esteem has been a huge issue for us.

I’m very happy that he has been building a good foundation of self confidence this past year. It means so very much to me. And remembering how he looked at me when he didn’t understand something, and had spent the day being told, maybe not with words, but with others’ reactions to him, that he was just stupid or not capable, or he was just being mean…well, that has been the hardest part.

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March 31

Autism & Me: My Son’s a Crasher

Think about that word for a moment. Crasher.

Those on the spectrum often have sensory issues. Some are oversensitive. (Actually, my son is oversensitive to loud sounds. The sensory stimulation of a movie theater, for example everything is dark except the hyper focus of the movie, which is larger than life, and sound, loud sound, is all around, vibrating the seats and the skin, can actually shut him down, like when a baby falls asleep from too much stimulation. This is why he often moves around while we’re watching a movie, going from lap to lap, or floor to lap.) Some are undersensitive, which can lead to some annoying or even dangerous behavior.

My son is a crasher, which means he’s undersensitive when it comes deep tissue stimulation. It means exactly what it sounds like, he “crashes”. Bouncing is a very common behavior. Hugs or squeezes often help him calm down and focus (which he can do by himself with the use of stress balls, playdough or those waterfilled donuts and tubes you can find in toy aisles).

But there are days (like today, which is last Thursday to you) when none of this seems to be enough. Days like today he walks down the hall slamming into the walls. Or he repeatedly flops onto the bed as hard as possible.

Over the years he’s become very good at knowing how hard to “crash” against what. But that doesn’t make it less alarming to people who don’t know, or, to be honest, less annoying on the days when it gets real bad. In the past, people have suggested that he was actually self punishing, or wounding himself with this behavior.

It could be worse (let the them “anal exploration” sink in for a moment.) But it is one of the larger challenges we’ve had to face over the last eight years.

Category: autism, Family, Personal | Comments Off

March 30

Autism & Me: Why I’m Not an Expert

April is Autism Awareness month, so since next week (this week by the time this is posting) is Spring Break I figured I’d start the month off early by writing a week of entries on autism.

Recently I was asked why I write SF/F/H when I could be writing about autism and help other people struggling with it. Well, there are three answers.

First, I’m not an expert on autism. I’m not a doctor, or a therapist, or a behavorialist. Some parents are inspired by their children to further their education and reach out to help other special needs kids. Currently that’s not feasible for me (though I do have ideas of what I want to do in the next 5-10 years if there’s no movement on my writing).

The only thing I am an expert on is my children. Yes, one of them is autistic, and that does give me some experience and certainly an opinion or two on the challenges that face people on the spectrum. But no matter how hard I try I can’t get into my son’s head, or into the heads of the other parents/people out there who deal with the challenge of autism.

Which brings me to point two, we are very lucky. My son is high functioning. He is determined (and stubborn). He scores above average in intelligence tests and he has yet to hit any sort of ceiling on his ability. He doesn’t suffer from any of the other problems that go hand in hand with autism, like muscular problems and OCD. We are very very lucky, and it would be irresponsible of me to think that our autism experince is typical and hold other people and other families to our standards.

In fact that sort of assumption is why Jenny McCarthy is somewhat disrespected by many in the autism community for the slant (as if autism has a simple cure, and further as if everyone has her income level behind them to care for their children) she approaches the issue from.

Finally, the lack of information and research with autism (what causes it, how to help) has risen to some really suspicious “medicine”. Chelation therapy (a detoxification that sometimes seems to help, until the drugs are no longer being taken, oh yes, and where the clinic most heavily pushing the therapy own the patent on the main drug used), GFSF diets (with really expensive foods, again most preached about by the people who stand to make money off it), distraction in the form of who to blame (vaccines? the government? genetics? the environment?). Many people become so wrapped up in blame and a cure that I feel that their children suffer.

What would it do to you if you grew up being told you were broken, but this drug, or this diet, or this research would “fix” you?

This is not something I want to contribute to. I don’t want to put another book on how to handle autism out there, draining families’ resources and causing more distraction and dissent.

My posts about autism are meant to be free. They are not a how to, they are a voice of support. You aren’t alone. There are lots of us out here, who aren’t experts or doctors or scientists. We’re just parents, siblings, caretakers and loved ones. You shouldn’t have to pay $19.95 to have me tell you, you’re not alone.

Category: autism, Personal | 2 Comments

January 8

Busy Wednesday

So last night (as you know if you follow me on Twitter) about nine thirty something just went wrong and I went from hoarse, but feeling okay to feeling absolutely horrible. I got the kids to bed and laid down to read a book and I just passed out. I woke up when Jason came home (with the book under me) still feeling horrible. It felt like my digestive system was going through a crash course on line dancing.

So we went to bed as soon as we could and luckily when I woke up I felt a lot better. However I had these dreams…

I’m only going to share one, because the others were what I call “plot dreams” which means they have a plot or a scene or a character I want to use in a story. Do I use my dreams in my stories? Abso-freakin’-lutely. Most of my dreams are pretty nonlinear, and often only make sense to me, but they often have elements that I file away for later. Like Bloodwalker, the first Ravenna Hall short that I wrote. The final scene? I had that dream. Now those of you who have read it know why I don’t ever say things like, “I want my dreams to come true.” No one wants my dreams to come true.

Anyway, this dream: I walked from my house (in the city) to a barn (in the country) down the road. I was very happy to see that Jennifer Pelland and Mary Robinette Kowal were practicing in an area outside. I was excited to see them there and hoped that I had a chance to talk to them before they left. Maybe we could even go for a trail ride together.

Inside I walk from stall to stall. None of the horses are my horse. In the dreams I don’t own a horse, I just have permission from the barn owner to ride. I’m terribly excited, especially when Alethea Kontis strides up in her riding gear about to do a little riding herself. The barn is a bit busy with other riders and owners coming and going, and since Alethea appears to be experienced at this barn an I am not I ask her advice on which horse I should ride.

She answers, “None of them. Are you sure you want to. All the horses here are pretty mean.”

I’m a bit surprised. I ask why she says that. And she answers, saying that they are all hard to ride. Easy and beautiful to watch, but hard to ride, and that if I want a nice relaxing trail ride I should look for another barn. She also says that if I do want to ride a horse from this barn I have to chose it myself and make the best choice that I can.

Then she leaves, I assume because she is off to gather her own horse since she is dressed for riding. So I go back to walking around the barn looking at horses.

At this point the dreams breaks apart and fades and at some point I wake up.

And the peculiarity of the dream hits me. Here’s a bit of background, I used to work at a barn. I spent three summers working at various barns here in the area, plus two winters. I was thirteen when I worked the first time and 15/16 the second time. The second time was much, much better as there were fewer people, particularly fewer kids my age playing favoritism games.

I adore horses. I love riding. I mourn that I haven’t been on a horse since I was 17. I badly want to own a horse some day, but I always ended up feeling so different from the barn environment that eventually I drift away. I got tired of taking care of other people’s horses and being subjected to other people’s moods on whether or not I got to ride. It was a very harsh lesson in life when I realized that as badly as I want a horse, it just wasn’t possible.

So I dream about horses a lot, and I often dream that I’m about to ride, or going to ride and for some reason I can’t. Sometimes there’s a person being mean to me, sometimes the dream ends too soon, sometimes I just cannot ride because the horse turns into something that is not a horse (like a broom). I came to the assumption long ago that in dream logic horses represent my aspirations (that whole want to own one, but can’t). So that I often dream that I can’t ride, but I’m in the barn, means that I’m in the area, but not yet achieving any of my aspirations.

Which throws this whole dream into a very odd place, most of Alethea’s guidance that all the horses are mean and hard to ride.

A very revealing and odd dream seeing as I think this is the first time I’ve ever seen other writers at my dream barn.

And since we’re talking personal stuff here, my son’s IEP meeting was today and, thank goodness, it went really well. A tip to anyone out there dealing with special education, it really, really helps to think about what you want from a meeting and go in ready, even with a written plan.

I’ve been writing up an essay/letter before every meeting addressing the tasks at hand and making it very clear what we want. I’ve found that going in like this has quickly ended any attempts at people trying to confuse us with terms and double talk, or excuses. Today, for example we got very little fighting and lots of “Oh, yes, that’s how we feel too.” (Now as I’ve said before the school staff isn’t a problem, but I have gotten lots of arguing from placement and rotating staff, such as people who manage various aspects of the ECE program for multiple schools.)

You have to take a hands on approach because it is in a person’s best interest to do what is best and easiest for them. You have got to advocate for your own child to help them be a success.

My son has been switched to a new class and is doing very, very well. Now he’s not being pushed very hard right now, but this step is vital to help him with the transition and to help him realize that the teacher is there to support him, not to work against him. Boy vs Teachers has been a huge problem and I’m very glad to see that both sides are listening to us.

After the meeting we went out to eat (Denny’s Grand Slamwich is quite yummy. So are the Pancake Puppies.) Then to BME (a used book, video game, movie and game store) where I procured:
-One Foot in the Grave by Jeaniene Frost (I’m skeptical about this one, because “half-vampire” sounds like the beginning of a bad internet RPG. But I hear great things.)
-Animals by John Skipp and Craig Spector (I also hear great things, plus I was jazzed to find A)a copy and B) in great shape.)
-The Dollhouse Murders by Betty Ren Wright (I read this as a teen and again, am glad to find a copy. It’s a creepy YA book about a girl who starts playing with a dollhouse in her aunt’s attic only the dolls start moving by themselves…to the positions the people who the dolls are modeled after were in the night someone killed Grandma and Grandpa. Very creepy set up.)
-The Tachyon Web by Christopher Pike (I still love my Pike books. A lot of them were lost in a move and they are hard to find now. BME almost always has one or two.)
-Moon Called by Patricia Briggs (Again, I hear good things. Plus, werewolves.)
-Spin by Robert Charles Wilson (Again, I hear good things.)
-The Secrets of Judas by James M. Robinson (Jason’s pick)
-The Werewolf Book by Brad Steiger (Research!)

Now I just need time to read them all.

Category: autism, Personal | 2 Comments

December 16

Autism Awareness Twitter Day

I just found out about this today. Autismfamily called for everyone on Twitter whose lives are touched with autism to share something about it, or their autistic loved one. Chest deep in editing (and facing an IEP meeting tomorrow, which always makes me nervous) I didn’t get to participate much. but I did comment that my son came home with 4 star stickers on his chart today, when 2 stars means he did work and behaved all day. Yesterday was a real hard day, so we needed a real good one to make up for it.

Today He bragged to me about “getting artsy and crafty” in art class, and taught me the ASL sign for “game”. I doubt anything else could have happened to help me feel better going into his IEP meeting tomorrow.

Autism is a very exhausting obstacle to face. Even more so because it’s spectrum disorer which means there is no one “rule” about what to expect from autism. My son is very lucky. He’s high functioning, above average intelligence and has no other complications that go hand in hand with ASD (which vary from under developed musculature to mental retardation and OCD). But it was only days after his diagnosis that we started having problems from other people who didn’t understand.

We were told his autism was our fault. We were told it was because we didn’t put him in daycare or preschool. We were told it was because we taught him his letters to soon. We were told it was because God was punishing us for not going to church. Only a year into his school life we were told by someone who was supposed to be a professional that we should just give up, stop pushing him and put him in a home for “people like him”.

We endure dirty looks when he is over stimulated out in public, and mean looks when he won’t do everything he’s told immediately when the nurses are prepping him for a doctor’s exam. (The nurse practitioner who he usually sees is very calm, gentle and respectful of his personal space. The dentist and optomistrist we’ve found are also fantastic, making jokes and talking very friendly to him to earn his trust.)

At times it’s not easy, but seeing how far he’s come is worth every frustrating moment.

So here’s a last link I’d like to share. ABC News’ 10 Myths About Autism. It barely begins to explain things, but everyone these days should have some knowledge about neuro-atypicality.

Category: autism, Family, Personal | 2 Comments