difficult child in action - what do YOU see...

Shari

IsItFridayYet?
Was cleaning off the video on my cell phone tonight...found several videos we'd taken 4 or 5 months back of different "episodes" difficult child was having.
I'm going to show them to child psychiatrist Thursday at his evaluation.
However, wanted to show them to you, see if anyone saw anything tell-tale about them.
This is a typical meal. This one happens to be in a small restaraunt, but this is how he is probably 2/3 of the time, or better. He would have been over 5.5 when this was taken.
The videos are loaded backwards (could only take a few seconds at a time). Order doesn't really matter, but they occured in 1-2-3 order.
Is this "normal"? (it is for us - and this is one of our "calmer" meals, he's not fighting anything)

I've got more on the phone (and sorry about the quality) but I'm not ready to share those with the internet just yet. They're violent. He is screaming, some in general, some profanity while he slams himself head first into the couch repeatedly, threatens to break a bowl by throwing it, then dropping it, then stomping on it (barefoot), then physically comes after me (which is off camera, but you can hear), then slams himself back into the couch, then throws something at me, the slams into the couch again. In a 30 second or less video...
 
in my humble opinion, he seems a little hyper, but not misbehaving at all. The hand flapping/rubbing the table could be sensory or autism related? This is only my VERY humble opinion, I have no real clue.
by the way, what a cutie :)
 

meowbunny

New Member
The sounds and hand flapping did make me think of something on the autistic spectrum, too. Other than that, I'd say it was a pretty typical 5 YO at a table while he was bored.
 

ShakespeareMamaX

New Member
I'm no expert, but it reminded me a bit of my difficult child, in the hyper aspect. He used to go at it with the silverware, banging away! Although this embarrassed people (my sister, for example) I let him go for it. Luckily, he never got violent at those times, but there is a bit of a similarity between our difficult children. The next thing that came to mind was, as said above, autism, for the same reasons.

He is a cutie and I hope all of this can be figured out for you guys.

Best wishes. <3
 

SRL

Active Member
Shari, I PM'd you but I'm not sure that it went through. Has he been tested for Fragile X? I didn't think of it until seeing the video but many of his symptoms do seem to match up--IQ ranging to mental retardation, hand flapping, Autisticlike traits, seizures, hyperactivity, behavioral problems, sensory, motor skills, ears protruding to some degree away from the head (which I think I was seeing on the video but wasn't sure with all that motion), etc.

http://www.fragilex.org/
 

Shari

IsItFridayYet?
BBK and Meow, this was not a "bad" moment with difficult child, this is just how life is with difficult child. This level of motion is pretty much the bar by which we measure all deviations. An awesome day is less. A "hyper" day is more. There were no "problems" per se in this video. This is just how we live.
I should have pointed out, tho, that you can see his hamburger in front of him and he is actually eating his meal while this is going on.
Shakespeare, he now does the silverware thing, too. I just don't have video of it. We don't make an issue of it. We live in a small town, which has positives and negatives, but one of the positives is that the lady that owns this restaraunt is one of difficult child's supporters, so she doesn't take issue with this sort of behavior. (she even lets shoes slide when they aren't going to happen).
SRL, I think I read about fragile x some time ago, but the thought hadn't crossed my mind since. I thought it was actually a type of autism. I'll do some more digging and maybe ask about it. What's it hurt for a blood test...I've already spent my retirement looking for answers, what's a little more.
I'm glad to have these converted to .wmv's, I'm going to take them to the psychiatrist Thursday. I'll take the violent one, too. Sorry, I'm just not up to sharing that one. But thanks for your input.
 

SRL

Active Member
Shari, there's a forum on that website. You might want to register there or (or another similar site) and have some parents of Fragile X kids take a look at the videos along with a list of the traits and diagnosis's your difficult child has. They may recognize something or else have some thoughts on where else to look. Your difficult child has a pretty sizable list of issues for there not to be some overlying neurological umbrella.

Fragile X isn't one of the Autistic Spectrum Disorders. As I understand it there are some overlapping traits and some kids with both diagnosis's. It's pretty common for doctors to order the tests when a child presents with a lower IQ along with Autistic traits that don't square well with Autism Spectrum Disorders (ASD).
 

Star*

call 911........call 911
Shari,

Thanks for sharing - Looking for answers and sharing is a great way to narrow down life.

Dude is not autistic although he has been suspect of being an Apsie at a times. When he would eat he had to always be moving. Legs flailing back and forth like he was on a swing - tapping, drumming, hand flipping - I thought for the longest time he was bored. Looking back at pictures of your son - I realize that mine did a lot of the same behaviors.

I don't know if that is typical hyperactive behavior but I can tell you that there were mealtimes when food was thrown, screaming and yelling ensued shortly after trying to make a meal time happen. He would "flip" and be nice one minute then run though the house screaming and throwing and busting things and the language was just obscene.

Question: When you took your son to this restaurant is there a lot of noise, stimulation, people talking? Or is it quiet? Does that matter - the level of quiet?

Have you ever (don't laugh) tried having dinner while playing classical music or elevator music - something calming and soothing to give him needed background noise - but not loud and irritating? Turn it on shortly before you eat dinner - and try eating with paper plates and have everyone be quiet as possible - no clanging of forks on glass type plates. Dim the lights - and speak softly - and see if there is a reduction in the hyperness.

If I had to take a guess - I'd say he is having a nice meal with his family, with sensory overload. Fragile X did come to mind - and I've no doubt that it gets more serious and no need to share is fine....believe me - live through it and you don't need anymore. lol

Dude eventually grew out of meal time hyperactivity - now he just fills a plate, sits, prays, inhales, and is done. If we eat out? I notice he's a little more hyper than he is at home - up and down, going to the bathroom, checking things out in the foyer - it's like you want to say SIT AND DO NOT MOVE....oh and if we go out - he still plays with the utensils.

Hugs
Star

Just wondering if it isn't some sensory overload - l
 

Shari

IsItFridayYet?
Star, I can't recall how noisy it was. The video sounds like a lot of noise, but I recognize all of our voices (so 5 or 6 people of our family there) and the phone was on the table recording, so I don't know if there was really that much noise or just the location of the phone picked it up and made it worse. The restaraunt is fairly open and organized. They sell some non-breakable antiques there, also. Its geared towards the older crowd (we go there (ad nauseum, I may add) because its not like others where he for sure gets overloaded). We were there last Saturday night and we were the only people there, yet he was this same way (we did have to take the silverware away because he got to flinging it - not so much on purpose, it just got away from him with all the flapping and flying), but there is the kitchen noise, still....

I've never eaten to classical music, tho we do eat a lot of meals in front of the tube now (much to my dismay - I am NOT a fan of tv). He does watch tv now (he didn't used to at all) so you can sometimes get him to sit and eat while watching something he likes on tv. I do use classical music when he wont' sleep at night. Sometimes it will get him to sleep, sometimes not. I will also drive him around to get him to sleep, and I always put in the classical then, too, and it sometimes works, sometimes not.

I also know when I keep him home because he's already overloaded, I pull the blinds, use lamps instead of ceiling lights (or none at all), and turn the heat up to 75 or better so its relaxingly warm - and he never argues about those things, which I think help him calm down.
 

BusynMember

Well-Known Member
in my opinion it looks like some form of autism. Fragile X is a genetic disorder that mimics autism. He is flapping, pounding, headbanging, etc. Yes, the kids are very hyper and in some ways mimic ADHD, but it's more extreme. However, we aren't experts. I highly recommend a neuropsychologist.
 

CrazyinVA

Well-Known Member
Staff member
I can't give an opinion on this behavior, since neither of my difficult children had any of these traits. I did want to comment that I think the video idea is a great one, and I'm glad you're sharing it with the doctor. I SO wish I could have had this when my kids were younger.. to show the raging they did. I remember being so overwhelmed by the episodes that they were difficult to recount later on, and I could never seem to get across just how bad they were. Cellphones with cameras make that much easier to show now.
 

Shari

IsItFridayYet?
MWM, you see the same things that made me think autism. If he's not interested in something going on, this is what he's doing. It is possible to engage him now (at one time it was not), but if he starts losing interest, this is what he's doing. Even now that he watches tv, every little bit he's up waving around til the tv catches him again. Legos even have to take flight every few minutes.
And there are a lot of times that he's doing this and we think he's in his own little world over there and he's somehow keeping track of everything going on in the entire room. Even to the point he's repeated phrases of conversations when he thought he wasn't paying any attention to anything (which made me think even more along autism lines). Other times, he is in his own little world. lol
Crazy, I don't know why I hadn't brought these out sooner. Had more at one time, and totally forgot about using them, which was the point of recording them in the first place. The phone works great because its inconspicuous, too. I tried catching him with the camcorder, but when I'd get it out, he'd get interested in that and whatever goofy thing he was doing would be stopped. And he broke it when I tried just leaving it out in the corner.
I caught a few things with it, but very little.
 

trinityroyal

Well-Known Member
Shari, I'm with MWM. The hand flapping and rhythmic motions sure look like autism to me. ADHD wiggling and fidgeting doesn't seem to have the same rhythmic, repetitive movements or the hand-flapping.

I would recommend a neuropsychologist evaluation too.

Trinity
 

Sheila

Moderator
It looks Pervasive Developmental Disorder (PDD) (includes autism) related to me also.

ADHD and motor skill delays are often part of Pervasive Developmental Disorder (PDD). So are speech, receptive and expressive delays.
 

SRL

Active Member
Shari, I believe you said he's been seen by a neuropsychologist, and is currently seeing a developmental pediatrician and a psychiatrist. Any parent familiar with Autism would see that video and supect that diagnosis or something related, so I'm curious as to their reasoning for ruling it out.

I did some digging on Fragile X as I don't know a lot about it. This is a video on youtube in which the child is calm enough to see the characteristic ear protrusion. (There are some other videos of this same boy stimming, hitting himself, etc.)

http://www.youtube.com/user/kristiem10
 

Shari

IsItFridayYet?
Thanks for your help. I'm getting a lot of things to bring up at tomorrow's appointment.

Their reason for ruling it out is that they are capable of engaging him and getting eye contact. They just don't "see" autism.

Autism was intially brought up by a counselor I had taken easy child 1 to for some minor issues. difficult child 2 was there and she wasn't "geared" towards kids, so he was quickly in his own world, doing the video thing, and bouncing around the room. She asked if we could talk about him for a bit before we got on with easy child 1's session, and turns out, she was the coordinator for the early education intervention program in her county (not the county we live in). She said he looks and acts just like the Pervasive Developmental Disorder (PDD) kids she works with. So that's how we even found the devped we're working with. She didn't actually refer, because she really couldn't, difficult child wasn't her patient or in her county, etc, but she gave us the name and we got ourselves in.

The dev pediatrician's autism evaluation was the longest and it was maybe an hour, at most, spent with one person, and again, this was when he was almost 4, I think. (we requested the autism evaluation when he was just 2). He'd been going to the early intervention preschool for 3 or 4 months by the time of the evaluation. He had started to interact with other kids (on his terms, but it was interaction) by this time, and he had some eye contact by this time, but from MWM and other parents of autistic kids, and his BT and Occupational Therapist (OT) (who see/saw autistic traits), we had some ideas on how to work on some things - we had worked intensly on eye contact. Getting down on his level, taking his face in my hand and pointing it towards me, pointing to my face with the other hand, saying "Look at my face. I happy face has a smile, does this face have a smile? Does this face look happy?" and pointing out faces/emotions on other people. The "emoticon's" on this website were key in that - he saw them one day and could pick out features of emotions from them, so we started working with the "smileys". He had to learn that. So did his brother and his bio dad.

And we had read the Explosive Child by then and I was the one to implement it in our home. And when we did that was when he "attached" to me. My mom, my ex-mother in law, and I beleive the attachment is less an emotional mother/son bond than an attachment to someone that he could, for once, could somewhat understand. At age 6, he is now overly attached, but again, it seems less an emotional attachment than a "functional" attachment. If that makes sense.

The neuropsyche testing came later, was ordered by devped to "rule out" autism. It was scheduled to have lasted 6-8 hours, but they stopped at just under 4 because they couldn't keep up with him. He became obsessed with worry about me not being in the room and anxious and started hopping on/over/under the tables and chairs. It was conducted by young, attractive female college students (a class of people he is attracted to). Put a middle aged man in there (especially who speaks broken English - anyone who he's not attracted to) and he'd be under the chairs for the duration.

If there's something that catches or keeps his interest, he'll not always do what you saw in the video, and its getting less as time goes on, but its still prevalent in his day-to-day existence with us. He's getting to where he will sit for some time watching tv without doing it, but its interjected here and there, still. At the early intervention preschool, when they were prepping him for the regular kindergarten class, prior to our decision to send him to Montessori, his teacher made cues to help him stop the hand action - the video behavior was very prevalent there, too.

Like I said, even Lego's, which he LOVES, and he will absolutely lose himself in, will have to "take flight" every few minutes. And he generally makes his noises when he's playing Lego's, too. But in Dr's offices, etc, he can "maintain" long enough that he doesn't get into this for them to see. He saw an Occupational Therapist (OT) every week for 2 years and it wasn't until 6 months into it that she saw the physical aggression, and we had to leave because he was physically hurting her (and she was pregnant). The behavior therapist has seen it, but it was under similar circumstances. She'd seen him weekly or bi-weekly for a year or longer before he attacked her and we had to leave.

They have just enough toys and "stuff" going on that he can maintain for that hour or so, but stick him his seat in the car and the flying hands are almost instant. Stick him in his seat in the car when he wants something and he'll lean forward and fling himself backwards into the seat so hard he's left marks on his head. Put him in a situation with a doctor (or anyone, really) he doesn't like the looks of and he'll crawl under the chairs, curl up in a ball, and make noise til they either leave or enuf time passes that he can work thru it (with his dentist, it took over an hour and half). His dentist treats a lot of special needs kids and she told her staff to treat him as an autist. One of the assistants, after the hour and a half, actually made a tent and got under the chairs with him to start the exam, then was able to work him into the big chair (with periods of running under the other chairs intertwined).

Sorry, I'm rambling...Hope that answered your question...that's the only answer they've given me.
 

trinityroyal

Well-Known Member
Shari, I'm sorry that you're having such a hard time getting an accurate diagnosis.
Truly, from everything you describe it does sound like autism to me.

Not every person with autism has trouble with eye contact, and eye contact issues do not manifest to the same degree in every autistic person.

Especially with the intense intervention you have been providing, your little one may be able to make (or mimic) good eye contact. One of the tricks I learned as a very young child was to look right above and between someone's eyes, just at the bridge of their nose. People think I'm making direct eye contact, but it's much less intense and uncomfortable for me.

If you're in a position to get another neuropsychologist evaluation done, I would look further into Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorder (PDD).

Trinity
 

Shari

IsItFridayYet?
You know, Trinity, you talk about eye contact...when he's "off", even if you hold his face toward you, he usually will not keep his eyes even on your face. I always just chalked that up to being a stubborn little boy, but maybe its worth mentioning, anyway. I have noticed he does it a lot more when he's already "off", anyway.
 

trinityroyal

Well-Known Member
Shari, I DO think it's worth mentioning.

Fwiw, a bit more insight. I hope it helps.

When I'm feeling a little more heavily Aspie, I have great trouble making eye contact with people. So I look either at the right or the left side of people's faces. When I'm feeling strong and together, I look above and between people's eyes. In neither case am I making eye contact, but because my face and eyes are pointing in vaguely the right direction, people are convinced by it.

My difficult child has quite a bit of trouble making eye contact, but he also has trouble interpreting eye contact. If you're not looking directly at difficult child, he will stare intently at you to try and pick up on some sort of social cues. (He has had years of socialization classes and has learned a lot of superficial traits of body language by rote.) But he won't look at your eyes, and he has terrible trouble discerning whether people are looking at him. There are many times when my head will be pointing in difficult child's general direction, but I'm merely looking at something in his vicinity. He interprets that as eye contact, and then he'll say something like, "Mom, stop looking at me funny." He perceives that I'm looking at him funny because I'm not looking at him at all, and he can't quite make out what I'm doing with my face.

Yes, I would definitely mention the eye contact issue to the dev pediatrician and others.

Trinity
 
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