My Kid is a Damn Nutter

[skysidhe]

I know everyone had so many good words of wisdom.

I like these responses just because they are natural ways to cultivate child development.

As far as diagnosis, experts and public schools they need to get back to the basics. These kids were just fine in school 50 years ago before diagnosis and boxing kids in became some kind of a crusade.

That might seem strange for a special education provider to say but I do believe that kids with normal/high intelligence should just be let free a little more. I hope the current trends in school change alot for the better.

Originally Posted by Beest

having read all the other responses,

Normal is over rated, maybe you could get a diagnosis of some such, many of us could. I played with him, he seemed OK, he put his toys back in place when I moved them, but he didn't have a fit about it, we built some block towers too.

Cabin fever. It sounds like he's bursting at the seams and needs to get out and do stuff , with other kids. Anybody who knows our kids schedules, swimming, soccer, gymnastics, hockey etc. etc.
At that age I think there was a baby tumbling thing, and swimming of course.

Originally Posted by Clodfobble

Yeah, I signed him up for one of those baby tumbling classes, at The Little Gym. He enjoys it, but its primary benefit for him has been learning to take turns, stop playing with one item and move onto the next even if he's not ready, etc. It's been good, but for the money I don't think I'll do it again.

Learning how to take turns and knowing when to stop an activity even when not ready is so valuable. Why not work on those skills now because the public schools will so be ready to. I would, if possible go mainstream classroom if possible espicially if he is a bright kid and it seems he is.

Originally Posted by monster

the difference between the inflatable place and a gym class is that in the class he sees the same kids again and again and gets to make friends. There's no social aspect to the bouncy place, other than fleeting interactions with strangers. Try to find a playgroup of some sort. if you go regularly to the bouncy place at the same time, you might well find yourself hooking up with other moms with kids the same age and your kids might even play nicely together. Sometimes. This is how our playgroup got started and we (moms)still meet weekly, even though the youngest is now in second grade.

There kind of balance in parenting is so important for development. There should be more of it. More people who see the potential of a kid and let them develop in the most natural way possible. I wish I had been this kind of parent or had someone like them around because there is so much wisdom in what they say. I think. Perhaps a new trend in diagnosis and treating in coming.

Anyway, clod. You will be fine and your son too. Just be happy and play alot and make play a learning experience

[LabRat]

I did a quick Medline search for "Sensory Processing Disorder" and "Sensory Integration Dysfunction " but came up empty handed. Autism/Aspergers have tons of papers. This is the most recent review I could find. It's not available directly via ejournal, but I am requesting it and once I have it, I'll send you (and anyone else who PM's me) a copy. If you see any other articles you want, just let me know.



Good luck, and please let me know if there is anything I can do.

Recent advances in autism spectrum disorders.
Charles JM, Carpenter LA, Jenner W, Nicholas JS.
Department of Pediatrics, Medical University of South Carolina, Charleston 29425-5670, USA. charlesj@musc.edu

OBJECTIVE: This review article provides an overview of the most recent developments in the literature regarding autism spectrum disorders including epidemiology, etiology, assessment, and management/treatment.
METHOD: A review of the recent literature was conducted using Medline and the search term "Autism Spectrum Disorders."
RESULTS: Autism Spectrum Disorders are more common than previously believed (1 in 166), and etiology appears to be multifaceted including both heritable and non-heritable factors. State of the art treatment includes comprehensive medical monitoring as well as behavioral intervention.
CONCLUSIONS: Current and anticipated federal funding, policy changes, and large scale research projects provide promise for increasing knowledge about Autism Spectrum Disorders.

[Sundae]

This thread is one of the many reasons this place is amazing.
Correction - the people posting here are some of the reasons this place is amazing.

[Clodfobble]

Since it got bumped, I suppose I should offer an update on things: The hyperactivity is much more under control, now that we have a better idea of what sets him off and what helps him feel more grounded. Turns out trips to the grocery store are weirdly therapeutic because he gets to ride standing up in the basket, and getting that swerving/swinging motion is supposed to be really calming (and the results are definitely observable on our end.) During the especially hellish time period prior to his diagnosis, it just happened that he hadn't managed to go to the store with me in weeks because of a variety of coincidental circumstances. Now I make up excuses to go at least every few days. We eventually had success in making his toys as heavy as possible like we were told to, but there were some failures at first. Let it be known that rice plus white glue will lead to mold. We had to throw out that collection of duplo blocks, but I filled the replacements with steel shot and glue instead, and those have worked beautifully. Also, no matter how confident you are that the thick plastic dinosaur will be water-tight after you seal it with hot glue, you will be wrong. Better to just fill it with steel shot from the beginning. Each time we returned a newly-weighted toy to him, you could tell he was exceedingly pleased with it. The downside is all this hefting weights will only make him stronger when he decides it's time for a flailing meltdown.

Originally Posted by Labrat

I did a quick Medline search for "Sensory Processing Disorder" and "Sensory Integration Dysfunction " but came up empty handed.

Part of the reason is it's not an accepted disorder in the DSM-IV. The symptoms and treatments have been well-known for a long time, but they almost always present alongside the autism spectrum disorders, so it hasn't been given its own separate diagnosis. And indeed, he does have an autism spectrum diagnosis as well, but as I mentioned earlier, multiple diagnoses are good for insurance purposes, so for now we're acting like we don't know it's part of a larger problem.

As for the other symptoms, not a whole lot of progress can really be expected right away. We are pushing harder on making him say more complete phrases even if we know what he wants, and we're supposed to discourage the echolalia as much as we can. That one is hard for me though, because I am certain that part of the reason he's as social as he is is we have happily encouraged his communication up to this point, even though it's not a typical conversation style. The compromise is that rather than ignoring it, I try to instead act as if it is a normal conversation. "Oh yes, that's from TV show X. Do you like that show? It is a good show." I can tell he's not happy with this change though, and I'm trying to carefully walk the line between training him out of his abnormal habits while not overly discouraging him.

[HungLikeJesus]

Why don't you just get a grocery cart for home? They're free!

[glatt]

Originally Posted by Clodfobble

I'm trying to carefully walk the line between training him out of his abnormal habits while not overly discouraging him.

You are such a good mom!

[Beestie]

I think/hope I speak for the class when I say that we will not grow weary of reading updates so err on the side of posting more often.

[lookout123]

Clobble you are so insanely awesome.

[footfootfoot]

Originally Posted by HungLikeJesus

Why don't you just get a grocery cart for home? They're free!

really barking with laughter.

[monster]

you can modify them too. My ceramics instructor has one in his yard designed for streetracing and fitted with a circular saw blade on the front to clear the crowds...... but you could start small:

[Griff]

Originally Posted by glatt

You are such a good mom!

ditto that!

[limey]

Originally Posted by Beestie

I think/hope I speak for the class when I say that we will not grow weary of reading updates so err on the side of posting more often.

ditto that!

[SteveDallas]

Originally Posted by monster

you can modify them too. My ceramics instructor has one in his yard designed for streetracing and fitted with a circular saw blade on the front to clear the crowds......

Is he traveling to New York for the big race? Or is there a local equivalent?

[monster]

there's a local equivalent. I think he may have moved on from that, though -he's currently developing very expensive lightweight electric bikes.

[Clodfobble]

Today has been pretty sucky. But that might actually be a good thing.

As with any medical condition that's not very well understood, there are a ton of "alternative therapies" with no medical studies to back them up. Some actually have medical studies to disprove them, and some are just really hard to test. One of the most popular alternative therapies is the Gluten-free, Casein-Free diet, which falls into the latter category: it's really hard to have a double-blind study, because parents can't pretend they don't know what their kid is eating from day to day, and usually the only way to quantify symptoms is by the parents' reports. There have been two major studies, but one showed a correlated reduction in autism symptoms, while the other showed no correlation. Anecdotal evidence on the web seems to indicate in general that it either works astoundingly great, or doesn't work at all--which is reasonable; there are so many forms of spectrum disorders it's not hard to believe there could be different causes for different types. At any rate, it's widely conceded that the diet can't hurt you, so doctors will tell you to try it if you feel like it.

ANYWAY. The theory behind it is that the kid is unable to properly digest gluten (wheat), casein (milk), or both, and the result of partial-digestion is a peptide which, if it were to get out of the intestines, through the bloodstream, and into the brain, would function exactly like an opioid: i.e., autistic kids are actually high as a kite on narcotics 24 hours a day. The thing that struck me when reading the vast amounts of glowing anecdotal evidence ("my kid started the GFCF diet and suddenly began talking for the first time three days later, was potty-trained a week later, was diagnosed as no longer having autism six months later, etc.") was that, just like all opioids, these peptides would be highly addictive--and one of the hallmarks of children who had responded well to the diet was that they utterly craved the offending foods.

Minifob's diet is maybe as much as 50% dairy. He wants 3-4 different kinds of dairy at every meal, and it's always had to be the bargaining element: 'you can only have more cheese after you eat some more X.' I can't think of a single dairy product he has ever rejected.

So we went cold turkey on Saturday. Well, almost--milk hides in freaking everything, and in the process of figuring out which baked goods he can't have (answer: most of them) I forgot to realize that, duh, M&Ms are milk chocolate, and he gets those as a reward for having dry diapers. So he actually had one each on Saturday and Sunday before Mr. Clod pointed out (politely) that I'm retarded.

Sunday morning, 24 hours into (almost) detox, he actually said to me, "No ma'am, no banana," which is significant. No ma'am is what I say to his sister, and for him to A.) realize it could apply to someone other than her, and B.) choose to insert this extra phrase when he's already quite familiar with just saying "no banana" is a big deal. But maybe he was gearing up to saying it anyway though, he has definitely been using more words since going to therapy...

Sunday night he started getting edgy, and today he's been a nutball. In theory, that's actually another good sign, because there's supposed to be a withdrawal period. He hasn't gotten the shakes or anything , but he does lay on the floor and ferociously scream when I tell him (for the hundredth time) that he can't have any cheese. And his general twitchiness notwithstanding, I'm pretty sure he said this morning, "This is a red spoon." He always identifies his spoon color, but the words "this is a" have never come out of his mouth before.

So. In another couple of days there should either be much more visible progress, or I'll be forced to admit that I've been seeing what I wanted to see for the last two days. I'll tell you this: while it would obviously be the greatest thing in the world to have discovered a magical switch that will suddenly clear his brain and give him an unobstructed path back to normalcy, a totally dairy-free diet is freaking hard to maintain. We basically can't take him to any restaurants if we're going to stick with this. On the other hand, it's not as hard as a dairy and gluten-free diet, so I'll be grateful if we don't have to go the extra mile and remove the second half from his diet as well.

Also: cheese and yogurt "substitutes" are the nastiest things on the planet. Not only did Minifob not want to eat them, I couldn't even stand the smell of them in the kitchen myself.