RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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I know what you mean. I am not into GFCF and that sort of thing, and when I first joined my local chapter of the Autism Society, that and alternative therapies seemed to be the main topic of discussion at the monthly daytime support meeting, on the Yahoo group, at the monthly autism treatment meeting, and within the local yahoo group run by the organizer of the monthly autism treatment meeting.

Well, I kind of sort of shook things up a little by going to all of the daytime support meetings and chatting on the Internet all of the time within the main Yahoo group--never confronting people directly, since that is against the rules (about three people did it to me, though), and introducing a lot of links to scientific and medical studies.

It turned out that a lot of people were very interested in hearing about scientific studies and more traditional medical and educational approaches, but they were afraid of being cyberbullied. (Someone else wrote me privately that one of the same ladies who'd attacked me had attacked her for questioning the credentials of a local doctor in the area that had been under investigation). A lot of people love me for helping them to talk about things that they didn't feel like they could discuss before. However, some people hate me because they were very happy with the status quo.

Currently, the GFCF and discussion of alternative medical practices is mostly confined to the autism treatment meeting and the yahoo group for those interested in that. I pretty much stick to the general daytime support meeting and general Yahoo group.

Part of the deal is that the Autism Society is all inclusive--by rule, they are supposed to let everyone in who obeys the rules and has a valid reason for joining.

Unfortunately, the location of the two monthly meetings is general knowledge, and everyone with an autism product to sell approaches the group--coming to meetings or asking to speak at the monthly autism treatment meeting, which I do not attend.

I will also point out that people switch camps all of the time--try the GFCF diet and alternative medical treatments for a few months then quit. Also, most parents with kids with classic autism eventually embrace mainstream medical practices.

Groan

I'm used to this. I ignore GFCF discussion, because it's like a religious faith and people is upset if you try to disagree. You can get help anyway since GFCG isn't the only topic...

This is quite true. There are many people in the Autism Society who have kids on the diet who have kids in the same school district and similar school-related issues. We also have many other issues in common.

Nobody agrees on everything or has exactly the same issues.

There are also tons of people who admit to trying the diets or other methods who are no longer doing it.

I just kind of sit there and let it go if someone I don't know well brings up something really strange in a group setting.

Completely agree...you know, this is the only autism board I really post at regularly, mainly due to the attitudes on these type of topics!

My wife says the attitudes she's run into here are even worse...parents won't get their kids flu shots because they heard that's what people are doing in America...

My entire family always gets flu shots, and my kids get their immunizations. People do die of the flu, and I wouldn't want that to happen to my kids. Also, I have read that Texas has more people without medical insurance than any other state, and there are a lot of immigrants and people that regularly travel to other countries (mainly Mexico and Vietnam) to see family. So I think that there is a risk of contact with someone who is infected with a disease for which immunizations are available.

Please don't assume that because views contrary to your own haven't appeared here that it is because everyone is on the same page as you. Some of us realize certain topics are inflammatory, unhelpful and best left unaddressed especially if it is an extreme view from either side.

ANYWAY. Potty training is going fairly well. It takes hours to get him to pee but I have managed it every day since starting and twice yesterday and the day before. It's going to take a very long time I'm sure, but I'm motivated and think we're off to a good start.

I'm glad that potty training is going well! My younger son is making some good progress, too.

Ditto, it takes hours, and in fact basically he seems to hold on for the chance to get off the toilet and wee then poo somewhere else that he prefers.
He had a stretch yesterday of almost six hours between going wee's. In my imaginary toilet-training Paradise, kids would be hooked up to drips so they need to go every 20 minutes

The message I hear when I talk to many of these other parents is that they feel they have an obligation to try anything and everything to help their child, period. Until they have proven to themselves it doesn't work, it remains something they have to try, and the concept that their child might be better served with parental attention and fewer appointments, restrictions or therapies never seems to enter their minds.

One thing is, for some kids, some of these things DO work. GFCF can make a large difference if a child has those sensitivities, some of the adults here have proven that on themselves (although we've also figured out that GF is usually the one to go for, not GFCF).

Another thing is that so there are so many good therapies being applied, and the course of development of an ASD child is so unpredictable, that their children do visibly improve, and they have no accurate method for understanding why, which results in a lot of miss-attribution.

What I tend to tell parents that seem to be willing to weigh things is this: for every success story from the DAN/GFCF people, I can find a similar or better one from a family that did none of the above. I am not convinced that any of that is what makes a difference in most of the cases, and the limited cold hard science that exists is supporting my view of things much more than theirs. What makes a difference is that parents are paying attention to their kids, and the needs they have. When an ASD child has that much energy directed at them, assuming it is positive, they will respond, assuming that they have enough deep inside to do so. Maybe not today, maybe not tomorrow, but eventually. I do believe that. Never give up.

All that said, I do encourage parents to look at food issues. Not GFCF, but food issues, with soy being a pretty common one and a good reason to not go blindly GFCF (which usually requires an increase in soy). Its simple enough and can make a child feel better, so why not?

The vaccination schedule here is different from the US, so we made sure both kids were up to date so we wouldn't have any issues with schools.

It's astounding how long they can hold it in. And in my son's case he's being surprisingly cooperative about sitting on the potty (considering it used to terrify him) and I'm doing a sticker chart which he's enjoying so I don't know why he would sit patiently on the potty and hold it in. He could wet 20 diapers in a day when he was an infant. I still change him 5-7 times a day but introduce the potty and he's going less than half that much. I'm starting to gravitate towards an "elimination communication" approach which is something I wanted to do when he was much younger but his Dad wasn't working at the time and it wouldn't have worked with him home but now that he's working I can try it. My son gives no sign whatsoever when he's going to the bathroom so I have him running around with no pants on right now (always within arms reach) so I can either catch him in the act or he can sit right on the potty if he wants. I give him his pants back if I think he's really done going for a while and a single layer cloth diaper so that it will leak and be uncomfortable and obvious to me if he does go again in his pants. It requires an incredible amount of attention from me though so I hope I don't burn out.

I think that we all deserve a pat on the back. It is so hard to be the parent of a child with classic autism. The parent has to learn to be a special education teacher, occupational therapist, speech therapist, researcher, advocate, psychologist, and doctor. Another mom with a kid with classic autism told me that sometimes she wishes that she could just be a mom.

Regarding pooping in the potty, my four-year-old is now up to 15 poops in the potty in the last three weeks.

I know this because the therapist made a wall chart for him--posted right in front of the potty--to count his poops in the potty. He writes a new number on a square on the chart each time he poops in the potty. He also gets a lot of praise.

Getting those first few poops out of him was very hard, and he even admitted being afraid of pooping in the potty. However, he now poops and pees in the potty half of the time with verbal reminders. He poops and pees in his pants the other half of the time.

My friend with twins with classic autism said that she had an easier time with potty training than a lot of people with kids with autism, but it still took her about a month.

James hung on and hung on and wouldn't go, then bedtime rolled around and once he was back in nappies he did three poos in a row! So awareness is obviously there. I wonder if there's some laxatives we could give him or something?

Mine just pooed in the potty for the first time, I had the kiddie potty on the floor and he did it of his own initiative ... but I know there's a whole lot more in there. It's early yet so I hope the rest finds it's way in there. I know if I put the diaper on the same will happen here. I got him to make all but one of his pees in the potty yesterday and the one that didn't go in is because I put pants on him for just a couple minutes so I could get dinner ready - no diaper, so it went down his pant leg and onto the floor (laminate wood, not carpet), not a pleasant experience for him so maybe it made an impression.