Statement of Parental Concerns
More than "Side Effects"?

A Few Words From Yesterday

Charlie on a walk after two days of rain (so the grass is very muddy, and puddly) "Loose tooth. Stuck." Charlie himself said these words last night. We had been watching YouTube videos; he kept asking for another one and another one and I felt, heard, saw his agitation level rising to the roof and gently shut the lid of computer.

At first I thought Charlie said "YouTube" and was asking for another video. He repeated the phrase and I echoed "loose tooth," whereupon he said, starting to grin, "Loose tooth" and "stuck." 


I thought back to how he's only been brushing the right side of his mouth. I thought about how the school nurse and his teacher made a big deal Tuesday about how he wasn't eating anything (though he did on Wednesday, so that could have been because he's gotten so choosy about the contents of his lunchbox). And as I looked at Charlie, I wondered how long had he been pulling his mouth into that configuration as if something was bothering him in there? And what about his wanting to eat (soy/lactose free) ice cream for the past four days? And waking up crying, knocking his forehead and crying so suddenly out of the blue, for the past few days---we've divined from anxiety about changing schools, yes (Charlie has called out for "school" while crying/knocking), and now, it seems, from something else too, possibly?

I could be wrong. I may not ever find out, as the tooth (if there is a loose one) might be swallowed or otherwise disposed of. But Charlie's words reminded me, there can be quite legitimate reasons for puzzling behavioral manifestations.

I guess I kind of tried to indicate that in Jim's and my statement of parental concerns, in nothing that "It is necessary to evaluate the effects of wearing a helmet (with a face mask and straps) on Charlie's behavior and communication, and to begin discussion immediately of a plan to fade the use of the helmet at school." Certainly it would change my behavior if I had to wear a large blue plastic item with a full plexiglass mask on my head for six hours of the day and, too, seeing me (seeing you; seeing anyone) in such would change the behavior of other people around me (around you; around anyone).

And certainly yesterday's IEP meeting/"IEP amendment" etc. meeting was mostly a matter of me reading the statement Jim and I had put together. (There was some ad libbing of course---years of watching Jim lecture and speak, and years of teaching, have taught me how to do that.) (In noted Charlie's changing food choices and appetite, I included the all-important example that he often turns his nose up at French fries these days; if we get him McDonald's fries, we end up eating them.) Charlie's case manager wrote down the requests for a BCBA to observe him monthly and for monthly clinic meetings. And the special education director said that it had indeed been inappropriate for Charlie's teacher to discuss placing Charlie at a place like the Bancroft Lindens Neurobehavioral Stabilization Program in our home while on a home visit, and not at an IEP meeting.

A few words that said a very very lot.

Yes I recorded the meeting.

And yes, I'll be looking for a discarded tooth in the sofa cushions.



Is it possible that Charlie has been crying out "tooth" instead of school? How has he reacted to losing other teeth? You say he hates to lose things - does he understand that he will grow a new tooth, or does he think that he is permanently losing a part of his body?

Lovely photo btw.


Damn- I hope that Charlie's tooth/mouth pain gets better! (Or that at least you find it...we've had quite a few go missing over the years as well).

Hopefully something positive will come out of the meeting.


I can't count the number of times Casey has had something physical attributing to a bad mood that I don't find out about until all else fails, and the clues were there and I didn't see them. Wouldn't it be wonderful if the tooth did come out , disappear or not (it will always reappear again lol) and some of his load might be lightened!?
Sounds like you got our point across, looking forward to hearing what comes of your meeting!


ABA started in Oct, in May little boy clawed his male T. That was the last day he was in our house, they were gone the first of July. Little boy had to put up with them at daycare and school until mid Oct but only a couple of days/wk. Plus, they were there as support not primary care which made it easier for him.

We've NEVER had behavioural issues before or since. NEVER. Oh, we get the age appropriate gripes and complaints but nothing that another child his age wouldn't do... IMO that doesn't count as behavioural.

Programming and staff play a HUGE role in children's moods. They like to blame the child and the parent - been to many of those during the ABA days - instead of looking at themselves and how they may modify their reactions/programming to better work with the different children.

Teeth... a bad word in our house.. have one that needs to be pulled but the Ped Dentist I think is hoping I can wiggle it out. Bonne chance.


OMG this is wild. This morning Bug woke up with ear pain. Then about a half hour later, "My Jaw Hurts" - well, did it hurt when the ear hurt? Yes.

The kid is getting a wisdom tooth - he found out about it the other day at the dentist. The kid is teething, lol, at the age of 17.... Of course that's the first thing I'd think of, wouldn't You? @@ ha!


BTW, Charlie turning up his nose at the fries could be something as simple as their using different oil one day when he got them. I know that when they changed something at one of the Chinese restaurants we go to, he wouldn't eat them again. I think the ribs were different or something like that, they probably ordered them from a different distributor.


I work for a dental residency program which is based in a clinic for special needs patients. We see this all of the time. Behavioral changes can very often indicate changes that are not obvious to the observer, even the closest observer. Tooth pain, headaches, earaches, etc., can all cause behavioral changes. It's good that Charlie is developing more of an ability to tell you.
I am glad that they are acknowledging some of what has gone wrong here. As you have said in earlier posts, it's not Charlie's fault.

Arthur Golden


With a lot of sadness, I have been reading your recent posts about Charlie, even though I have not commented in awhile.

Thinking about what to comment to try to be helpful, I still have the same thoughts I have shared with you at least a few times over this year of 2009 - try Facilitated Communication (FC). To be more specific, I do not mean as a formal part of any learning at school, but in the privacy of your own home. When Charlie is using the computer, offer your hand to provide support to his hand.

See if there is any difference in the quality of his typing. Do not even think about fading support. Do not do "hand over hand" and do not consciously try to get him to type anything specific.

But if you happen to anticipate the words he is typing before he actually types them, do not be concerned so long as you "feel" he is taking the lead and deciding what to type. I know that my advice now is not in accordance with so-called "best practices" but Charlie is in crisis and this type of FC could help.

I pray for your success.

Arthur Golden

Bonnie Sayers (autismfamily)

Matthew lost an upper tooth recently and I showed him the mirror and I looked at a dental chart I have that shows ages for new teeth and right on target for a new one.

Kristina Chew

@Arthur, I will try that.....Charlie generally prefers not to be touched too much right now, and he has been less interested in the computer than he was this summer. But as he is starting in a new school, it does seem a good point to try new things.......thank you for the suggestions.

@Louise, Charlie's pronunciation of "school" is distinct! It's also a word he hears quite a bit and knew how to type with little help from me the first he tried it. Some of the things he's been doing---not eating, showing signs of a headache, not wanting to brush his teeth, being agitated by something very suddenly to us but I suspect not so to him---we've seen all these before prior to him losing a tooth! He hasn't lost any in a while and I hadn't thought of this possibility till yesterday.

@Bonnie, is it a molar Matthew lost?

Kristina Chew

@Beth and Bonnie and aenea and Bonnie,
No sign of a tooth, yet.......I also noted that Charlie has gotten a bout of acne on his face including some in all those really painful places (right over the upper lip). I am sure that those must be driving him crazy!

@farmwifetwo, most of Charlie's teeth have come out from wriggling. Sometimes it has taken a while. When he was 10, it seemed that he lost one every month.

@Moi, He's rejected fries at all McDonalds! I know, what is the world coming to........

Arthur Golden


You wrote "Charlie generally prefers not to be touched too much right now, and he has been less interested in the computer than he was this summer." From what you have been writing, it seems that Charlie has been "touched" too much lately in a very bad way by staff at the school. Also the computer may not be providing much reason for him to bother with it so much.

In the early 1990s, there were many documented reports of persons who preferred not to be touched, and some to even be approached too closely or else they would physically attack, who readily accepted the touch involved with Facilitated Communication. I think these people, as would Charlie, quickly realized that FC allowed them to communicate much better. Also, they showed a great interest in keyboarding when used for FC when previously their interest in computers may have been much less. It is such a shame that scientists could not design scientific experiments to show that FC was for real. As a parent, I am willing to accept my over 15 years of personal experience with the FC of my son Ben.

By the way, it took Ben over a year before he was willing to try to express himself with FC and then it took me a couple of weeks before the words started to flow. Then two experienced facilitators from israel visited us in Boston and Ben immediately used FC with them at a very sophisticated level. A few weeks later in 1994 at age 22, Ben was living in Israel in a program run by these two facilitators. Although the very extreme anxiety Ben was experiencing at age 13 disappeared when Ben left his ABA-type program in 1985 to first go to Japan for 2 years and then 7 years at the Boston Higashi School, now 24 years later Ben still no longer displays the anxiety often associated with autism. Please note that Ben is still very much autistic, as confirmed by the evaluation earlier this month by the leading autism expert in Israel.

Again, given the current crisis situation for Charlie, I hope you give my suggestions about Facilitated Communication a try.

Arthur Golden


The tooth may not be in the sofa cushions. If Charlie swallowed the tooth it may be ... elsewhere.
I'm reminded of how, when I was teaching at a private school for autistic children before I went to law school, some of the older boys' behavior would change when they reached puberty. There was a lot of angry turning over of tables, screeching and frantic fumbling at pants zippers. Lots of public masturbation, too,
Adolescence is difficult for so-called normal kids; it must be terrifying to autistic teens who can't talk about the way they feel.
I wonder if you tried teaching Charlie American Sign Language? Some of the nonverbal students had success with ASL. They could express when they were hungry, thirsty, had a headache or needed to use the bathroom. I think much of the head banging and wrist biting stems from frustration at not being able to communicate.

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