Tuesday, March 30, 2010

Ari Neeman

It was recently brought to my attention that a young man with Aspergers has been appointed to the National Council on Disability. But apparently, many parents are upset because Mr. Neeman apparently has expressed concerns about people trying to "cure" autism instead of embracing autistic people for what they are. Apparently, a lot of people think Mr. Neeman is not really autistic enough and that he will somehow use this position to block genetic research. Mr. Neeman, however, it appears is worried that people are traveling down a eugenics path to prevent the birth of people who are autistic.

This seems to be such an unfortunate reason to fight Mr. Neeman's nomination. How wonderful that someone has been so successful despite the difficulties that come with autism. How I would love the idea that some day my son could form a nonprofit group that would fight for federal legislation to limit abuse of restraints in public schools, that some day my son could possibly be so proud of himself and who he is. That some day my son could form friendships with others like himself.

The National Council on Disability has nothing to do with searching for a cure, and everything to do with opening up society, with fighting to stop ostracism of the disabled, with championing the rights of the disabled.

Mr. Neeman is only 22! A child! Of course some of his opinions are over the top, of course he is too sure of himself.

And of course he's wrong if he thinks that most people with autism won't benefit from medical intervention. Most people with autism have a lot of struggles and difficulties in life that are 100% biologically based. Because -- although we like to forget this -- we ARE 100% biologically based. Everything we think, feel, do, is a direct result of something happening in our body, which includes our brain. So ... of course people who can't do the most basic functions that really are important to surviving and thriving in this world without needless anxiety and pain ... they deserve all the help we can afford to give them. Once they are adults they are free to refuse it, of course. And we must be careful not to pathologize temperament, which is of course also biologically based. It is a fine line.

But at the end of the day, does it really matter if Mr. Neeman is wrong about something? He has no power to keep anyone from searching for a cure. But he can do a lot of good. For starters, he can give a lot of people like me hope. And I really need that.

I say, let him be wrong. Let him be gloriously, wonderfully, totally wrong. Let him be on the council, and be wrong.

Monday, March 22, 2010

Imitating Facial Expressions

lately I've become re-concerned with this area. One of the hardest parts for me personally to deal with emotionally has been that toby does not react with distress when I am angry or scared or exhibit other negative emotions. Often, he laughs. As in, he laughs when I cry.

I've been thinking more about that lately, and I know that part of the empathy has to do with difficulty recognizing and imitating facial expressions.

When Simon was a year old we played a game where all I did was blink exagerratedly at him and he excitedly did it back. I tried it with Toby and all I got was a blank share, then he would drift off and look the other way altogether.

Until about 3 months ago that is. At over 2 and a half, he finally caught on to the blinking game. It was hard but I just kept working on it, up close to his face, and he got it. And now he loves it.

Could I do the same thing with other emotions? Can I teach him empathy?

Friday, March 12, 2010

Mitochondrial Disease -- a continuing question mark for us

Someone in a support group forwarded me a link to this recent interview about mitochondrial disease and autism. The first time I heard of "mito disease" (I think) was in relation to the Hannah Poling case. At the time, it seemed like some ultra-rare thing that surely didn't apply to us.

But the more I have heard about it the more I have wondered. For example, it seems to have something to do with, among other things, energy production, and T certainly has had a lot of low energy moments (punctuated by periods of hyperactivity). We thought of him as a "laid back" baby, actually. And the interview talks about these fevers ...

T DID have several viruses during the first couple of years and has had very high fevers before ... up to 105. For some reason, the pediatricians and children's hospital don't seem to take fevers very seriously anymore, which I find confusing.

I remember calling a friend once, freaked out and sitting in the bathtub with T ...

Well, anyway ... so I wonder again ... could this really apply to us?

I found this summary from the Cleveland Clinic in Ohio (whoever that is), and they state that "[d]epending on which cells of the body are affected, symptoms might include:

•Poor growth
•Loss of muscle coordination, muscle weakness
•Visual and/or hearing problems
•Developmental delays, learning disabilities
•Mental retardation
•Heart, liver, or kidney disease
•Gastrointestinal disorders, severe constipation
•Respiratory disorders
•Increased risk of infection
•Neurological problems, seizures
•Thyroid dysfunction
•Dementia (mental disorder characterized by confusion, disorientation, and memory loss)"

Apparently, it doesn't show up the same way in every child. The interview claims that some kids with mitochondrial disease don't have regressions, like Hannah Poling had. (I've never been able to decide if T has really had "regressions.")

Certainly several of these things are familiar to us, like poor muscle coordination (hard to say what is 'loss' in a developing infant), visual and hearing problems ... does this include processing disorders?, developmental delays, gastrointestinal disorders, constipation, respiratory disorders, neurological problems, maybe even increased risk of infection ...

I don't know! The Cleveland Clinic claims the odds are about 1 in 4000, in the general population, which sounds pretty low. But the doctor in the interview claims that about 4% of children with ASD might have it. That's pretty high!

I think it's very expensive to try to get this diagnosed. There are some new blood tests, but they won't catch every possible type. Otherwise, from what I've heard, it's horrible. Muscle biopsies, spinal taps.

There's some sort of supplementation that folks in my support group call a "mito cocktail," but I don't know (a) how much science is behind it; (b) if it really works; (c) how expensive it is; (d) if it's potentially harmful ....

So many, many, many mysteries and they all seem so important. It's really overwhelming.

Got the memo -- Part II

It's been a bad week on the autism front. Can I confess if I haven't already that every couple of days we have a stretch that is so great I still entertain thoughts that maybe T doesn't really have autism? But it's like he turned 3 and it just flipped a switch.

We have been on a NEARLY (not quite) total media blackout with our kids, but as they got older I have let them watch videos just a couple of times. More on that later. But after seeing Bob the Builder maybe 3, 4 times? -- 2 days ago T started reciting, over and over again something like: "hey kids! you can join our fan club by calling 1-888 [repeats entire phone number missing like 2 or 3 digits] or go to www dot bob the builder dot com.

While lining blocks up in the window sill.

On THAT day, I was able to more or less keep my humorous outlook.

But at the beginning of this week the major meltdowns started. I THOUGHT we already had meltdowns, but this is a whole new level. Screaming like someone is torturing him while a stream of unintelligible and garbled words emanate between racking sobs.

And yesterday, the self injury commenced. First he was trying to hit me, and I said, no hitting, and then he just starting hitting himself. It was like ... a really really bad dream.

I gotta tell you that was pretty close to the worst moment I've had since this whole frakking nightmare started.

But I hate to leave this so dark, so I'll tell you that the day ended a little nicer.

Last night, as on so many nights, T just could not fall asleep. He was so tired he was even SAYING "you want to sleep," "you want to lie down," but then when I lay down with him he would nurse and nurse and nurse and then stop and gyrate around and then sit up and spout some of his favorite scripts or something he thought was funny ... until I had to call my husband in to get him. (I can't carry him in to my husband or he has a meltdown when I leave. But often he can leave me okay.) I had to give up because he's keeping S awake.

So we take out the melatonin again. Because it's been 2 hours since he has been obviously read to go to sleep but unable to.

After S falls asleep, part of me just wanted to leave T out there with Daddy, which I sometimes do. I'm just so tired. But that causes problems in the middle of the night. (another story)

So I go to get him. He looks like he's already asleep (as is Daddy) and I stare at him for awhile. I automatically note for the thousandth time his skinny little upper body and everything I've learned about hypotonia and lack of postural stability, and all my questions about how that has anything to do with the rest of it race through my brain again. And I wonder again what I need to be doing to build up his upper body strength and get him to lift his head up off his chest and look up and look around and it all just kind of whirls around in there until I push it aside.

I pick him up to carry him to bed and he cracks open his little eyes and smiles the most beautiful smile as he says, "It's Mommy."

And I guess it's going to be okay.

Sunday, March 7, 2010

The Paleolithic diet -- worth knowing about

Well, I am still learning about this, but I am very intrigued by the so-called Paleolithic Diet. It seems that our ancestors during the pre-agricultural age didn't eat beans or any grains like wheat, rice, etc. Which kind of makes sense when you think about it, because these things are all grass, which is not exactly intuitively appealing. They also didn't do dairy. Can you imagine chasing and catching some giant wild animal ... and then MILKING it?? LOL. Although people have been drinking goat milk for a really long time, but not apparently during the paleolithic or before.

I think it's interesting because:

* well, the paleolithic diet happens to be, among other things, casein free and gluten free

* it is naturally low glycemic index, so it probably makes you less likely to get diabetes

* it is naturally high in fruits and vegetables, which we already know are good for us.

They DID eat a lot of meat though! The catch here, though, is that their prey animals were all wild game, so they were very lean. (similarly, the fruit was all wild, so it wasn't nearly as sugary as what you get in the grocery store)

Apparently this means also ... a diet naturally low in saturated fat.

So ... it's interesting to study. Here's a really nice, thoughtful article:

The major downside to this diet? no sandwiches! no crackers! no cereal! how does one feed a toddler/preschooler?? what do I pack on the way to the playground? so far my best ideas are: (don't laugh ...) beef jerky (if I can find some not full of horrible chemicals), dried fruit (if I can find some without too much sugar), and maybe some of those vegetable chips (you can get beet chips and sweet potato chips now with no trans fats, only canola oil). For crunchy snacks I guess you get nuts and maybe carrot sticks? crudite?

My problem is that we also suspect food sensitivities, so I think we need to do an "elimination diet" where you only eat certain limited things and then add foods back one at a time to see what happens.

Throw in the chronic constipation in one kid with frequent diarrhea in the other, and planning a diet/nutrition plan gets really complicated.

So I'm not sure yet exactly what I'm going to do, but in the meantime, I think the paleo diet is definitely worth knowing about.

Just Wanna Dance

I thought it would be fun to share some funny things my kids have done and said lately:

* My husband was trying to get T to eat while T was listening to his favorite music. Husband: "Do you want some sandwich? Mango? Kiwi?" T: "You want to dance!" T then proceeds to "boogie down." Hilarious.

* S hands me something small, green and suspicious. he says: "You [meaning S] don't know what THAT little crispy is." Me: "Where did you get it?" S: "It came out of your nose!"

* T, upon awakening last night at 1 am: "Having a picnic! The blue car is having a picnic!"

After hearing the Kinks sing "Lola" on the radio the first time, T had a total meltdown when it was over because I wouldn't play it again. "YOU! WANT! THE MAN! TO SING! LOLA!"

So I had to look it up on You Tube when I got home, and it is now his and S's favorite song. I did some soul searching, because, well, you know it IS about a transvestite which I can't really explain to them. But I decided that teaching and rewarding T's communication is really a lot more important. And anyway, Lola is an awesome song. Check it out: http://www.youtube.com/watch?v=Ixqbc7X2NQY&feature=related.

Still it is a little weird when this little 3 year old in the back seat starts belting out: "l-o-l-a, LOLA!" And now S has started carrying around his little guitar and strumming on it while singing it. It's ... astonishing and hysterical.

Monday, March 1, 2010

Got the memo

So it appears that T finally got the autism memo, LOL. He sure looked "atypical" a year ago, but now he is lining up blocks and spinning around in circles like a pro. So I guess now that he's 3 perhaps we're going to get some more stereotypical ... well, stereotypical behaviors. Ah well, I was pretty much out of denial anyway. Interesting thing about the blocks though: when I asked him what he was doing (and I had to ask him about 7 times before he answered), he told me he was making a train. Hmm.