Re: Stimming---how do you help them stop this?

July 17, 2007

This is way out of my league. If I were involved in these kids lives I

'd get them to a neuro, an ENT and a gastro.

Chain wrote:

>Liz,

>I have been reading every post about stimming and I wanted to ask you

>something. My little twin grandsons get SP,PT,,and OT and they have all told

>me that Matt and Will both do A LOT of stimming. I have never been around a

>child that had autism so this is all new to me. They flap their hands, walk

>on the tip toes ALL THE TIME, do a lot of just staring into space, and you

>CAN CALL either of their names until you fall out and they ignore you. We

>have had their hearing tested and it was normal. When they do look toward

>you it is like they are looking through you instead of at you. Matt has

>never said a word, Will did talk at a little over a year old but he lost it.

>He has started to repeat some now...The other day I told Matt to come back

>in the living room boy, and Will said boy,boy,boy. I have heard him say

>door, baby, no, but when he says them they are not appropriate, for instance

>he might say door and me rocking him to sleep. Is there some way I can use

>the words he is saying to help him understand how to do it appropriately?

>They will be 3 next month.

>

>,

>Granny to Matt and WIll

>

>On 7/17/07, Liz <lizlaw@...> wrote:

>

>> It's a vitamin B thing.

>>

>>Janice Hoover wrote:

>>

>>>Yeah, I have heard that vitamin protocols can help with

>>>stimming.

>>>

>>>The thing is... our children have a hard time eliminating

>>>toxins and a hard time keeping their nutritional levels up.

>>>This has simply got to be all connected with their behaviour

>>>and play an important factor.

>>>

>>>Sensory issues are both environmental and genetic in cause

>>>which is why each child is soooo different. This mucks up

>>>the ability to treat effectively.

>>>

>>>If you think it is a stim, call out to your child and have

>>>him do something for you. Does he readily respond or does

>>>he ignore you? Somewhere in this you've got to trust that

>>>'mommy instinct' which is so wise and wonderful.

>>>

>>>Janice

>>>

>>> [ ] Re: Stimming---how do you

>>>help them stop this?

>>>Date: Tue, 17 Jul 2007 18:31:18 -0000

>>>

>>>>, If you've not had an OT evaluate for sensory

>>>>integration dysfunction, you may want to. A couple of

>>>>good books on the subject are The Out of Sync Child and

>>>>Sensational Kids.

>>>>

>>>>My child had proprioceptive and vestibular dysfunction due

>>>>to Vitamin E deficiency (I say had because the symptoms

>>>>are gone as long he is supplemented with Vit E). His

>>>>sensory-seeking behaviors included: running constantly,

>>>>climbing and jumping from the highest points he could get

>>>>to before I could stop him, hitting his hand against his

>>>>leg, bumping his face into pillows, turning his head and

>>>>bumping his ear into the pillow, " couch diving " (he would

>>>>stand on the arm of the couch and just free-fall belly

>>>>flop on the the couch, jumping on the couch and beds. At

>>>>night he couldn't settle himself to sleep as he had to

>>>>kick his legs and push his feet against me or the

>>>>bedrails. It would take him over an hour to go to sleep

>>>>even after an exhaustive day of seeking. This is what he

>>>>did all day long. He didn't play with toys much, just

>>>>sensory seeking. We could barely take him anywhere

>>>>because he always had to dart off and run the length of

>>>>the store. He did not flap his hands, spin, rock, or

>>>>some of the other more recognized " stims " , but it was

>>>>stimming none the less. OT helped (brushing and swinging

>>>>protocols), but it just managed the symptoms some.

>>>>Vitamin E literally made them vanish over night and now

>>>>we have a happy, playful child who isn't bothered by the

>>>>sensory issues.

>>>>

>>>>I'm not suggesting that every child with vestibular and

>>>>proprioceptive dysfunction is suffering from a Vitamin E

>>>>deficiency, but that was what was going on with my boy

>>>>and I thank God every night for Dr. and

>>>>her willingness to post her son's story.

>>>>

>>>> >

>>>>

>>>>>Okay, now I have another question after reading all this

>>>>>

>>>>info. My son likes to run around the house. Back and

>>>>forthusually laughing or just making sounds. Is this

>>>>stimming? He will also run with his sisters when they

>>>>are running around to try and play with them. But he

>>>>will do this on his own. Now I am afraid this could be

>>>>another way he is stimming. Any thoughts?

>>>>

>>>>>

>>>>>-------------- Original message --------------

>>>>>From: " Janice Hoover " <jscott@...>

>>>>>

>>>>>Vicki,

>>>>>

>>>>>If I could tell you which sensory channels were broken

>>>>>and how specifically to 'make it stop', I'd be a very

>>>>>rich woman building my house next to Bill Gates for I

>>>>>would have the cure to autism!

>>>>>

>>>>>There are two schools of thought on stimming, the school

>>>>>where kids are allowed to do it because the teachers are

>>>>>unable to physically stop the kids and so tell the

>>>>>parents 'it's okay' and the REALITY which is...

>>>>>

>>>>>Stimming is what takes our children away from us and

>>>>>what I believe in some ways differentiates disorders

>>>>>like dyspraxia where the child is still social and still

>>>>>'connected' with our world from severe autism where a

>>>>>child has become locked away in a world of 'self

>>>>>stimulation' thus our world has become insignificant to

>>>>>him.

>>>>>The more a child stims, the more the child is leaving

>>>>>our world and entering the world of sensory play. It is

>>>>>addictive and the child REALLY WANTS IT so it is HARD to

>>>>>take it away. But if I saw my child lighting up a crack

>>>>>pipe, I certainly would take it away! Even if he was

>>>>>already addicted!

>>>>>

>>>>>I have heard some people say that just redirecting the

>>>>>behaviour works, deep pressure hugs work and changing up

>>>>>what the child is doing. I was so lucky since Mark was

>>>>>pretty much a true dyspraxic and his only stimmy

>>>>>behaviours came from attending classes with kids who

>>>>>were doing it. I knew to tell him 'absolutely not' and

>>>>>just tell him not to do it and why it was bad for him.

>>>>>Sometimes he would do it without thinking and I would

>>>>>intervene. In his case, it was not very serious because

>>>>>he never got 'lost' in that world.

>>>>>Here are some posts from NACD message board on Stimming

>>>>>including a definition of what it is. Post #1 gives you

>>>>>a definition but post #5 really shows you what stimming

>>>>>'is'!

>>>>>Janice

>>>>>

>>>>>#1

>>>>>

>>>>>Hi Everyone,

>>>>>

>>>>>Stimming is short for self-stimulatory behavior. It is

>>>>>repetitive, non-productive behavior that stimulates a

>>>>>sensory channel that is not being processed correctly.

>>>>>There are quite a few different types of behavior that

>>>>>are stims. The thing that they have in common is that

>>>>>they disrupt the child's normal interaction with his or

>>>>>her environment. " Normal " children and some adults

>>>>>engage in small amounts of stimmy behaviors when tired,

>>>>>bored or stressed sometimes. Whether a child is dangling

>>>>>shoestrings or sitting dazed visualizing an entire Harry

>>>>>Potter movie or Barney video, while they are involved in

>>>>>the stim, they are quite indifferent to what is going on

>>>>>around them.Beyond this, it is hard to generalize except

>>>>>to say that stimming takes our children away from us,

>>>>>stops learning, and hurts social interaction. It is

>>>>>often addictive behavior. "

>>>>>#2

>>>>>

>>>>> " Hi everyone! This is what I did to stop my son,

>>>>>, from stimming. I pulled all the blinds in the house

>>>>>and we lived in darkness. We viewed t.v. this way and

>>>>>played computer games this way. We did tons of

>>>>>pleoptics. Everywhere I went, that flashlight went with

>>>>>me. I had no problem taking it out in public and if

>>>>> would stim, I would use it. I didn't let him out

>>>>>of my sight. Every time he would stim, I would redirect

>>>>>him. If he was stimming with toys, I would show him how

>>>>>to play right with them. You basically have to stay on

>>>>>your child 24/7 and it is hard work. My husband leaves

>>>>>the house at 6:30 AM and isn't back until 7:00 PM so it

>>>>>was up to me. However, when my husband was home, he

>>>>>wouldn't let stim either. That is very

>>>>>

>>>>important. If you are going to leave your child in

>>>>

>>>>>somebody else's care, they can't let them stim. The more

>>>>>they stim, the harder it is to make them stop.

>>>>>

>>>>>My son used to stim by ripping up grass and throwing it,

>>>>>rolling a ball or rocks down a slide and just watching

>>>>>it, watching trains and cars go round and round, lining

>>>>>up stuff animals and rolling them down the couch one by

>>>>>one. He also used to like to chase his shadow, look at

>>>>>objects on the wall and stare at ceiling fans.

>>>>>

>>>>>My blinds are now open, I can run my ceiling fans and my

>>>>>sons knows not to stim. If he even glances up at the

>>>>>ceiling fan, he will look right at me, shake his head

>>>>>and say " no stim " .

>>>>>

>>>>>I have a real funny story. My mother just got a kitten.

>>>>>I was playing with the kitten dragging a string and the

>>>>>cat was naturally stalking it. Well, informs me

>>>>> " kitty no stim " . I guess we got the message across

>>>>>pretty good!!!

>>>>>It took almost a year to get him to completely stop, it

>>>>>was very hard, but very worth it. Once the stimming

>>>>>stops, you see your child for the first time. They are a

>>>>>completely different child and it is WONDERFUL.

>>>>>

>>>>>#3

>>>>>

>>>>>Novelty has intensity so novelty really does help a lot

>>>>>when it comes to stopping stimming. Put out objects and

>>>>>toys that are not seen very often and watch the stimming

>>>>>move closer to being exploring. TV in darkened room can

>>>>>work. If you happen to have a slide projector and some

>>>>>old slides, that works in a darkened room. Toys that

>>>>>play music, make animal noises, light up, talk, sing are

>>>>>all good as they have added intensity.

>>>>>

>>>>>#4

>>>>>There are many reasons why a child doesn't get it!

>>>>>Sometimes it is due to inattention. Sometimes it is due

>>>>>to the child not being able to or not wanting to really

>>>>>engage in processing what you are talking about when you

>>>>>are reading. Sometimes the children shut down when they

>>>>>anticipate that you are going to ask a question right

>>>>>after you make a statement. Some kids don't get it

>>>>>because they are stimming. Some don't get it because

>>>>>they can't relate to some language in a story.

>>>>>

>>>>>It would be specific to your child. I know that there

>>>>>are plenty of parents out there that have kids that

>>>>>didn't get it but now do. How we changed that may be

>>>>>different for many of the children. It's not a one size

>>>>>fits all situation. Processing is certainly a key issue,

>>>>>working memory, stopping stimming behavior, increasing

>>>>>vocabulary, tonal processing....the list is long. That's

>>>>>why the programs are individual programs.

>>>>>__________________

>>>>>

>>>>>#5

>>>>>

>>>>>Stimming in general

>>>>>

>>>>----------------------------------------------------------

>>>>

>>>>>Please know that this particular post is not a

>>>>>recommendation for a specific child, but rather,

>>>>>hopefully a post that will help clear up some confusion.

>>>>>The one thing that I have appreciated about NACD from

>>>>>the beginning is the importance of seeing the child, not

>>>>>diagnosis.

>>>>>Stimming....first of all, EVERYBODY stims. The degree to

>>>>>which it creates a problem is the degree where we start

>>>>>to become concerned. Let me give you an example of a

>>>>>stim. Early in the morning, as my first cup of

>>>>>Starbucks's French Roast finishes dripping into the cup

>>>>>and I take that very first sip, I stim. That first sip

>>>>>creates a euphoric reaction that over the years has

>>>>>become addictive. Then shortly after, I fix breakfast

>>>>>for the kids, I either head off to the office for evals,

>>>>>or to the couch to begin the homeschool day. That stim

>>>>>did not stop me from having an effective day.

>>>>>Considering that we are all on a continuum of

>>>>>development, let's look at the other end of the

>>>>>spectrum.

>>>>>I stop and think about the most severe stimmer that I

>>>>>have seen. As the day starts, early in the morning, he

>>>>>is already ahead of the game. Since he sees so well in

>>>>>the dark, he has spent the last several hours stimming

>>>>>on his black and white sheets. He gets up out of bed and

>>>>>cruises through the house, vocalizing specific

>>>>>frequencies that have no meaning in language, watching

>>>>>as his world of baseboards and ceiling fans do their

>>>>>trick on him. He is feeling that same rush of euphoric

>>>>>emotion, but his doesn't stop and allow him to

>>>>>

>>>>understand the world that we live in. This is because,

>>>>

>>>>>over time, his global processing did not advance and so

>>>>>the world as we know it has no meaning to him. His world

>>>>>is all about creating those endorphins. The catch 22 is,

>>>>>as some of you know, we can't increase the global

>>>>>processing if the stimming prevails, and until we get

>>>>>the processing up, he will choose, or even fight, to

>>>>>stim. This is the child with no language, the child who

>>>>>does not feel pain if he bangs his head on the ground.

>>>>>This is the child who doesn't see a person as anyone

>>>>>that they want to interact with. After all, at this

>>>>>place in the continuum, who needs people when you have

>>>>>baseboards. For this child...the situation is extreme so

>>>>>extreme measures must be taken if we want to pull him

>>>>>out of that world and into ours. This may mean a totally

>>>>>darkened house with the child sitting on our lap, as we

>>>>>lovingly hold him a few feet from a 12 " " TV with videos

>>>>>

>>>>we have made to teach him a word to use. This is the child

>>>>

>>>>>that we recommend having a battery of warm bodies doing

>>>>>activities that we have designed 24/7.

>>>>>

>>>>>Now, let's take a step forward in that continuum. That

>>>>>same child has responded well to program and we have had

>>>>>enough progress to actually have light in the house. He

>>>>>sees Mom with all new eyes. Eyes that will actually meet

>>>>>and hold contact for a few seconds throughout the day.

>>>>>This is the child that has now learned to say " Mama "

>>>>>, " Movies " , " Eat " , and, of course, " No. " This is still a

>>>>>kid in the danger zone. We need as many people as we can

>>>>>get interacting with him. We have a long list of

>>>>>activities that we can do to increase his language and

>>>>>processing abilities. The wonderful thing is, he wants

>>>>>it now. See, people do have something to offer and as

>>>>>long as they offer it, he will engage in this world. The

>>>>>hard thing is, if engagement is not being offered, there

>>>>>are always the baseboards and corners of the room and

>>>>>doors that open and shut. Those things still seem to do

>>>>>nicely as far as this child is concerned, and they still

>>>>>have the ability to steel him away from us. The nice

>>>>>thing is though; Mom no longer has to sit with her arms

>>>>>wrapped around him in a dark room to get him to look at

>>>>>a video. So we USE the TV as our standby therapist. Is

>>>>>he still a 24/7? For sure probably still a 7 day kiddo,

>>>>>but maybe not a 24 hour. Mom does get to take a bubble

>>>>>bath as long as there is a decent video running.

>>>>>Let's take some more steps forward and look at what

>>>>>happens. Sensory channels are becoming more normalized.

>>>>>While he may be easily distracted by movement in the

>>>>>peripheral field of vision, he does not live there.

>>>>>Noises are no longer painful, so the family can actually

>>>>>go to a restaurant without too much fear. He is now

>>>>>speaking in phrases. or even sentences, and will gladly

>>>>>communicate what he wants. Processing is up some more so

>>>>>the meltdowns are less frequent. Hopefully by now, there

>>>>>are a few toys or computer games that he can do and

>>>>>actually enjoy. If we have done a good job of rotating

>>>>>out videos so that he is not stuck only on a specific

>>>>>Disney movie, we can decrease TV/Video. Mom can actually

>>>>>have a conversation on the phone with Grandma for a good

>>>>>chunk of time without fearing that she will loose her

>>>>>son to a world that will not let him return. Are we out

>>>>>of the woods? NO, unfortunately not. But, is it a 24/7

>>>>>redirect? No. You have to look carefully at percentages

>>>>>

>>>>of appropriate and therapeutic input compared to the time

>>>>

>>>>>spent sneaking away to stim. If that is only for a short

>>>>>time, oh well. If it is for hours or days, OH NO! I can

>>>>>vividly remember once going away for a few days to

>>>>>conduct a workshop when Evan was at this stage. I knew

>>>>>something was up even before I saw him. My oldest son

>>>>>was playing in a State Championship game that Sunday so

>>>>>instead of going home, I left Houston and went straight

>>>>>to the ballpark. As I got out of my car, I saw another

>>>>>mother on the team. Her exact words were " What is wrong

>>>>>with Evan? I saw him this morning and he didn't even

>>>>>speak. He has sat in the chair rocking his head back and

>>>>>forth through the whole game and has not said word. This

>>>>>is so not like him. Is he sick? " You can imagine the

>>>>>first words I spoke to hubby who had been left in charge

>>>>>for the week. It took me weeks to get Evan's vision back

>>>>>to where it had been the day that I left, and for days

>>>>>it was like working with a hung over drunk. But, I did

>>>>>get him back. This is because he was far enough along by

>>>>>this point and on the continuum.

>>>>>Now, more steps ahead. We have all done our work well.

>>>>>We have a child whose processing is up. His language is

>>>>>fluent. His independent time is spent looking more and

>>>>>more like neuro-typical kids, and his visualization and

>>>>>conceptualization are more balanced. Maybe this child

>>>>>still deals with a little excess emotionality, or can

>>>>>get lost in imaginary play, so we carefully watch his

>>>>>balance. We make sure he gets enough non-fiction input

>>>>>and if we see alone in the back yard with imaginary

>>>>>swords for too long, we call him in to take out the

>>>>>trash. This is a child we still watch, but this is also

>>>>>a Mom that we sometimes have to remind her to go take

>>>>>that Bubble Bath. You see, she remembers the days that

>>>>>he banged his head on the floor and couldn't tell her

>>>>>that he was in pain because his ear drum had ruptured.

>>>>>She remembers the days that his best friend was a string

>>>>>that he carried around. She remembers the days that it

>>>>>took every minute of her day jumping through hoops; just

>>>>>to get his eyes to meet hers. She is still on this

>>>>>

>>>>message board reading as we are telling everyone not to

>>>>

>>>>>let their children stim. She lives in fear that what she

>>>>>has worked so hard to build will vanish.

>>>>>

>>>>>Let me tell you about a little gal that I watched go

>>>>>through these steps. She was a precious little gal with

>>>>>an extra chromosome who also had severe sensory

>>>>>problems. We had gone through the steps above on that

>>>>>continuum of development. A few years had gone by since

>>>>>we had seen the head shaking , finger dancing , string

>>>>>twirling days. On the phone one day her mother had been

>>>>>telling me a great unit study that she had been doing

>>>>>with the American Girl series. Since I am the mother of

>>>>>5 boys and don't get to see many dolls, I requested that

>>>>>she bring her wonderful little dolls to the next

>>>>>evaluation to share with me I will never forget when

>>>>>this precious little girl walked in with her expensive

>>>>>dolls...all with their heads shaved. I had to remind Mom

>>>>>

>>>>that we had come a long way since the days that her

>>>>

>>>>>daughter used to sit in the floor, rock back and forth

>>>>>and shake Barbie dolls to stim. I let her know that

>>>>>unless she was attempting to develop a deep compassion

>>>>>towards chemo patients, it would fine to let the little

>>>>>girl have dolls with hair.

>>>>>

>>>>>It is important to notice in this post that I refer to

>>>>>the SAME child throughout a continuum, and not different

>>>>>children. The point that I want to make, is that we want

>>>>>to take a child from where they are and progress

>>>>>forwards. If you are the mother of the child starting

>>>>>

>>>>>from point 1 on that line, you have a hard job,. But ,

>>>>

>>>>>your child can advance to the next step. We will do all

>>>>>that we know to help you take each and every step. If

>>>>>you are farther along on that continuum, do not be

>>>>>confused when you see various suggestions made to other

>>>>>parents, or even the ones that we made to you

>>>>>previously. Stay in touch with your support staff.

>>>>>Sometimes it helps for them to help you clarify if what

>>>>>you child is doing fits into the " odd " or " totally

>>>>>normal " category.

>>>>>Keep in mind, you do not go from step 1 to step 25

>>>>>overnight, but we are all just as anxious to help you

>>>>>get there as fast as possible!

>>>>>

>>>>>I hope this helps you all to understand that a

>>>>>recommendation for child " A " regarding stimming, may not

>>>>>be exactly the same for child " B " . And to add, what

>>>>>wonderful children each and every one of them!!!!

>>>>>

July 17, 2007

Ok then I misread a prior post I thought wrote about this issue

warning folks with E. I really believed that was true which was one of

the reasons I have not tried it today. Sorry.

wrote:

>Liz, with all due respect, there is no scientific research to

>substantiate that statement and I certainly don't want anyone to be

>frightened by it. Like I said, new folks were not around during the

>midst of the Vitamin E discussion and it pays to do your research

>here and anywhere else that you can to learn about Vitamin E. It is

>also very important to administer any type of supplementation while

>discussing it with your own doctors.

>

>Please see 's post #58564 re: safety of Vitamin E and the

>research behind the claims that it could cause bleeding problems.

>BTW - the risk of bleeding is that when you take high doses of Vit E

>you may induce a Vitamin K deficiency, which can cause bleeding

>problems and if anyone does begin higher doses of Vitamin E, then

>they should also be supplementing with Vitamin K. Like I said

>before, there is a lot of info in the archives and I'm thinking

>someone even put together a summary of it (like the summary of fish

>oil that occasionally gets posted so newcomers can see it). If that

>summary is still out there, perhaps it could get reposted by the

>author?

>

>>

>>>This is very interesting!! How much Vitamin E did you supplement

>>>

>with? My boys do the exact same thing you described with your son.

>Very, very sensory seeking. They have no attention span to sit and

>properly play with toys. They are ALWAYS on the go! And it is hard

>for them to settle down for sleep too. I don't think they are

>getting E in any of their supplements.

>

>>>

>>> They have been diagnosed with sensory processing disorder.

>>>

>EVERYTHING is sensory for them.

>

>>>

>>> I would love if something as simple as adding adequate amounts

>>>

>of Vit E would help with this.

>

>>>

>>>Dana

>>> and Garrett, 3 years old as of Mar 24

>>>SCD One Year!!!!!

>>>Celiac, ASD, Speech and Motor Apraxia, sensory processing disorder

>>>

>>>---------------------------------

>>>Ready for the edge of your seat? Check out tonight's top picks on

>>>

> TV.

>

>>>

July 18, 2007

Have you looked into VBA or verbal behavior analysis? It's

primarily used for kids with autism. You may be able to motivate the

child who isn't speaking to try and use the repetitive words of the

other child to teach him language. Many people do the programs in

their homes with the help of a consultant. There are a few public

schools that have VBA classrooms and also a handful of private

schools, such as the Mariposa School in Cary, NC, that use this

method. While this is really ABA it's not done like the Loovas ABA

programs and relies much more on the child's natural motivation so

that he will WANT to participate rather than being forced. Here's a

website to get you started:

http://www.drcarbone.net. There are others but I can't remember them

right off the top of my head. If you're interested in looking at

this further, you can e-mail me and I can get you more websites.

Vicki

>

> > >>

> > >>>Okay, now I have another question after reading all this

> > >>>

> > >>info. My son likes to run around the house. Back and

> > >>forthusually laughing or just making sounds. Is this

> > >>stimming? He will also run with his sisters when they

> > >>are running around to try and play with them. But he

> > >>will do this on his own. Now I am afraid this could be

> > >>another way he is stimming. Any thoughts?

> > >>

> > >>>

> > >>>-------------- Original message --------------

> > >>>From: " Janice Hoover " <jscott@>

> > >>>

> > >>>Vicki,

> > >>>

> > >>>If I could tell you which sensory channels were broken

> > >>>and how specifically to 'make it stop', I'd be a very

> > >>>rich woman building my house next to Bill Gates for I

> > >>>would have the cure to autism!

> > >>>

> > >>>There are two schools of thought on stimming, the school

> > >>>where kids are allowed to do it because the teachers are

> > >>>unable to physically stop the kids and so tell the

> > >>>parents 'it's okay' and the REALITY which is...

> > >>>

> > >>>Stimming is what takes our children away from us and

> > >>>what I believe in some ways differentiates disorders

> > >>>like dyspraxia where the child is still social and still

> > >>>'connected' with our world from severe autism where a

> > >>>child has become locked away in a world of 'self

> > >>>stimulation' thus our world has become insignificant to

> > >>>him.

> > >>>The more a child stims, the more the child is leaving

> > >>>our world and entering the world of sensory play. It is

> > >>>addictive and the child REALLY WANTS IT so it is HARD to

> > >>>take it away. But if I saw my child lighting up a crack

> > >>>pipe, I certainly would take it away! Even if he was

> > >>>already addicted

July 18, 2007

and others,

Please share with me the brand names of Vit E that you use. Is it soy free?

Thanks, Dana

klbushey@... wrote:

We are already getting OT,ST and ABA. He was getting PT but they

stopped it last December. Didn't make sense but they said he met his milestones.

He still was an uncoordinated mess but I didn't question it. It was only

1x/month so I don't know how much he really got out of it anyway. The EI

services will stop after next week and then he will be in the special ed

preschool in the township which seems to be wonderful.

We are just starting the vitamin E. I must say I have done it for less than a

week and seen changes. Before he didn't like to build with his pop-blocks. If it

got two or three high he would knock it down or if they started to fall, he just

gave up. Two days after starting the vitamin E he is a building machine! He

actually goes and goes until ALL the blocks are used. And if they fall he just

picks them up and tries again. He was also building with the pegs his therapist

had today and didn't mind that his sister was doing it with him. He even

patiently waited his turn. My husband mentioned that he saw my sons hand

coordination do much better suddenly. He didn't know I started the E the day

before. This was with the bare minimum dose. So I will increase it a bit and see

if there are any more changes.

Can I ask what type /amounts of vit E you are using? That is so great that you

achieved such drastic positive results! I am so happy for you!

-------------- Original message --------------

From: " " <kwatsoneei@...>

, If you've not had an OT evaluate for sensory integration

dysfunction, you may want to. A couple of good books on the subject

are The Out of Sync Child and Sensational Kids.

My child had proprioceptive and vestibular dysfunction due to Vitamin

E deficiency (I say had because the symptoms are gone as long he is

supplemented with Vit E). His sensory-seeking behaviors included:

running constantly, climbing and jumping from the highest points he

could get to before I could stop him, hitting his hand against his

leg, bumping his face into pillows, turning his head and bumping his

ear into the pillow, " couch diving " (he would stand on the arm of the

couch and just free-fall belly flop on the the couch, jumping on the

couch and beds. At night he couldn't settle himself to sleep as he

had to kick his legs and push his feet against me or the bedrails. It

would take him over an hour to go to sleep even after an exhaustive

day of seeking. This is what he did all day long. He didn't play

with toys much, just sensory seeking. We could barely take him

anywhere because he always had to dart off and run the length of the

store. He did not flap his hands, spin, rock, or some of the other

more recognized " stims " , but it was stimming none the less. OT

helped (brushing and swinging protocols), but it just managed the

symptoms some. Vitamin E literally made them vanish over night and

now we have a happy, playful child who isn't bothered by the sensory

issues.

I'm not suggesting that every child with vestibular and

proprioceptive dysfunction is suffering from a Vitamin E deficiency,

but that was what was going on with my boy and I thank God every

night for Dr. and her willingness to post her son's

story.

>

> Okay, now I have another question after reading all this info. My

son likes to run around the house. Back and forthusually laughing or

just making sounds. Is this stimming? He will also run with his

sisters when they are running around to try and play with them. But

he will do this on his own. Now I am afraid this could be another

way he is stimming. Any thoughts?

>

> -------------- Original message --------------

> From: " Janice Hoover " <jscott@...>

>

> Vicki,

>

> If I could tell you which sensory channels were broken and

> how specifically to 'make it stop', I'd be a very rich woman

> building my house next to Bill Gates for I would have the

> cure to autism!

>

> There are two schools of thought on stimming, the school

> where kids are allowed to do it because the teachers are

> unable to physically stop the kids and so tell the parents

> 'it's okay' and the REALITY which is...

>

> Stimming is what takes our children away from us and what I

> believe in some ways differentiates disorders like dyspraxia

> where the child is still social and still 'connected' with

> our world from severe autism where a child has become locked

> away in a world of 'self stimulation' thus our world has

> become insignificant to him.

>

> The more a child stims, the more the child is leaving our

> world and entering the world of sensory play. It is

> addictive and the child REALLY WANTS IT so it is HARD to

> take it away. But if I saw my child lighting up a crack

> pipe, I certainly would take it away! Even if he was

> already addicted!

>

> I have heard some people say that just redirecting the

> behaviour works, deep pressure hugs work and changing up

> what the child is doing. I was so lucky since Mark was

> pretty much a true dyspraxic and his only stimmy behaviours

> came from attending classes with kids who were doing it. I

> knew to tell him 'absolutely not' and just tell him not to

> do it and why it was bad for him. Sometimes he would do it

> without thinking and I would intervene. In his case, it was

> not very serious because he never got 'lost' in that world.

>

> Here are some posts from NACD message board on Stimming

> including a definition of what it is. Post #1 gives you a

> definition but post #5 really shows you what stimming 'is'!

>

> Janice

>

> #1

>

> Hi Everyone,

>

> Stimming is short for self-stimulatory behavior. It is

> repetitive, non-productive behavior that stimulates a

> sensory channel that is not being processed correctly. There

> are quite a few different types of behavior that are stims.

> The thing that they have in common is that they disrupt the

> child's normal interaction with his or her environment.

> " Normal " children and some adults engage in small amounts of

> stimmy behaviors when tired, bored or stressed sometimes.

> Whether a child is dangling shoestrings or sitting dazed

> visualizing an entire Harry Potter movie or Barney video,

> while they are involved in the stim, they are quite

> indifferent to what is going on around them.Beyond this, it

> is hard to generalize except to say that stimming takes our

> children away from us, stops learning, and hurts social

> interaction. It is often addictive behavior. "

>

> #2

>

> " Hi everyone! This is what I did to stop my son, ,

> from stimming. I pulled all the blinds in the house and we

> lived in darkness. We viewed t.v. this way and played

> computer games this way. We did tons of pleoptics.

> Everywhere I went, that flashlight went with me. I had no

> problem taking it out in public and if would stim, I

> would use it. I didn't let him out of my sight. Every time

> he would stim, I would redirect him. If he was stimming with

> toys, I would show him how to play right with them. You

> basically have to stay on your child 24/7 and it is hard

> work. My husband leaves the house at 6:30 AM and isn't back

> until 7:00 PM so it was up to me. However, when my husband

> was home, he wouldn't let stim either. That is very

> important. If you are going to leave your child in somebody

> else's care, they can't let them stim. The more they stim,

> the harder it is to make them stop.

>

> My son used to stim by ripping up grass and throwing it,

> rolling a ball or rocks down a slide and just watching it,

> watching trains and cars go round and round, lining up stuff

> animals and rolling them down the couch one by one. He also

> used to like to chase his shadow, look at objects on the

> wall and stare at ceiling fans.

>

> My blinds are now open, I can run my ceiling fans and my

> sons knows not to stim. If he even glances up at the ceiling

> fan, he will look right at me, shake his head and say " no

> stim " .

>

> I have a real funny story. My mother just got a kitten. I

> was playing with the kitten dragging a string and the cat

> was naturally stalking it. Well, informs me " kitty

> no stim " . I guess we got the message across pretty good!!!

>

> It took almost a year to get him to completely stop, it was

> very hard, but very worth it. Once the stimming stops, you

> see your child for the first time. They are a completely

> different child and it is WONDERFUL.

>

> #3

>

> Novelty has intensity so novelty really does help a lot when

> it comes to stopping stimming. Put out objects and toys that

> are not seen very often and watch the stimming move closer

> to being exploring. TV in darkened room can work. If you

> happen to have a slide projector and some old slides, that

> works in a darkened room. Toys that play music, make animal

> noises, light up, talk, sing are all good as they have added

> intensity.

>

> #4

> There are many reasons why a child doesn't get it! Sometimes

> it is due to inattention. Sometimes it is due to the child

> not being able to or not wanting to really engage in

> processing what you are talking about when you are reading.

> Sometimes the children shut down when they anticipate that

> you are going to ask a question right after you make a

> statement. Some kids don't get it because they are stimming.

> Some don't get it because they can't relate to some language

> in a story.

>

> It would be specific to your child. I know that there are

> plenty of parents out there that have kids that didn't get

> it but now do. How we changed that may be different for many

> of the children. It's not a one size fits all situation.

> Processing is certainly a key issue, working memory,

> stopping stimming behavior, increasing vocabulary, tonal

> processing....the list is long. That's why the programs are

> individual programs.

> __________________

>

> #5

>

> Stimming in general

>

> ----------------------------------------------------------

>

> Please know that this particular post is not a

> recommendation for a specific child, but rather, hopefully a

> post that will help clear up some confusion. The one thing

> that I have appreciated about NACD from the beginning is the

> importance of seeing the child, not diagnosis.

>

> Stimming....first of all, EVERYBODY stims. The degree to

> which it creates a problem is the degree where we start to

> become concerned. Let me give you an example of a stim.

> Early in the morning, as my first cup of Starbucks's French

> Roast finishes dripping into the cup and I take that very

> first sip, I stim. That first sip creates a euphoric

> reaction that over the years has become addictive. Then

> shortly after, I fix breakfast for the kids, I either head

> off to the office for evals, or to the couch to begin the

> homeschool day. That stim did not stop me from having an

> effective day.

> Considering that we are all on a continuum of development,

> let's look at the other end of the spectrum.

>

> I stop and think about the most severe stimmer that I have

> seen. As the day starts, early in the morning, he is already

> ahead of the game. Since he sees so well in the dark, he has

> spent the last several hours stimming on his black and white

> sheets. He gets up out of bed and cruises through the house,

> vocalizing specific frequencies that have no meaning in

> language, watching as his world of baseboards and ceiling

> fans do their trick on him. He is feeling that same rush of

> euphoric emotion, but his doesn't stop and allow him to

> understand the world that we live in. This is because, over

> time, his global processing did not advance and so the world

> as we know it has no meaning to him. His world is all about

> creating those endorphins. The catch 22 is, as some of you

> know, we can't increase the global processing if the

> stimming prevails, and until we get the processing up, he

> will choose, or even fight, to stim. This is the child with

> no language, the child who does not feel pain if he bangs

> his head on the ground. This is the child who doesn't see a

> person as anyone that they want to interact with. After all,

> at this place in the continuum, who needs people when you

> have baseboards. For this child...the situation is extreme

> so extreme measures must be taken if we want to pull him out

> of that world and into ours. This may mean a totally

> darkened house with the child sitting on our lap, as we

> lovingly hold him a few feet from a 12 " " TV with videos we

> have made to teach him a word to use. This is the child that

> we recommend having a battery of warm bodies doing

> activities that we have designed 24/7.

>

> Now, let's take a step forward in that continuum. That same

> child has responded well to program and we have had enough

> progress to actually have light in the house. He sees Mom

> with all new eyes. Eyes that will actually meet and hold

> contact for a few seconds throughout the day. This is the

> child that has now learned to say " Mama " , " Movies " , " Eat " ,

> and, of course, " No. " This is still a kid in the danger

> zone. We need as many people as we can get interacting with

> him. We have a long list of activities that we can do to

> increase his language and processing abilities. The

> wonderful thing is, he wants it now. See, people do have

> something to offer and as long as they offer it, he will

> engage in this world. The hard thing is, if engagement is

> not being offered, there are always the baseboards and

> corners of the room and doors that open and shut. Those

> things still seem to do nicely as far as this child is

> concerned, and they still have the ability to steel him away

> from us. The nice thing is though; Mom no longer has to sit

> with her arms wrapped around him in a dark room to get him

> to look at a video. So we USE the TV as our standby

> therapist. Is he still a 24/7? For sure probably still a 7

> day kiddo, but maybe not a 24 hour. Mom does get to take a

> bubble bath as long as there is a decent video running.

>

> Let's take some more steps forward and look at what happens.

> Sensory channels are becoming more normalized. While he may

> be easily distracted by movement in the peripheral field of

> vision, he does not live there. Noises are no longer

> painful, so the family can actually go to a restaurant

> without too much fear. He is now speaking in phrases. or

> even sentences, and will gladly communicate what he wants.

> Processing is up some more so the meltdowns are less

> frequent. Hopefully by now, there are a few toys or computer

> games that he can do and actually enjoy. If we have done a

> good job of rotating out videos so that he is not stuck only

> on a specific Disney movie, we can decrease TV/Video. Mom

> can actually have a conversation on the phone with Grandma

> for a good chunk of time without fearing that she will loose

> her son to a world that will not let him return. Are we out

> of the woods? NO, unfortunately not. But, is it a 24/7

> redirect? No. You have to look carefully at percentages of

> appropriate and therapeutic input compared to the time spent

> sneaking away to stim. If that is only for a short time, oh

> well. If it is for hours or days, OH NO! I can vividly

> remember once going away for a few days to conduct a

> workshop when Evan was at this stage. I knew something was

> up even before I saw him. My oldest son was playing in a

> State Championship game that Sunday so instead of going

> home, I left Houston and went straight to the ballpark. As I

> got out of my car, I saw another mother on the team. Her

> exact words were " What is wrong with Evan? I saw him this

> morning and he didn't even speak. He has sat in the chair

> rocking his head back and forth through the whole game and

> has not said word. This is so not like him. Is he sick? "

> You can imagine the first words I spoke to hubby who had

> been left in charge for the week. It took me weeks to get

> Evan's vision back to where it had been the day that I left,

> and for days it was like working with a hung over drunk.

> But, I did get him back. This is because he was far enough

> along by this point and on the continuum.

>

> Now, more steps ahead. We have all done our work well. We

> have a child whose processing is up. His language is fluent.

> His independent time is spent looking more and more like

> neuro-typical kids, and his visualization and

> conceptualization are more balanced. Maybe this child still

> deals with a little excess emotionality, or can get lost in

> imaginary play, so we carefully watch his balance. We make

> sure he gets enough non-fiction input and if we see alone in

> the back yard with imaginary swords for too long, we call

> him in to take out the trash. This is a child we still

> watch, but this is also a Mom that we sometimes have to

> remind her to go take that Bubble Bath. You see, she

> remembers the days that he banged his head on the floor and

> couldn't tell her that he was in pain because his ear drum

> had ruptured. She remembers the days that his best friend

> was a string that he carried around. She remembers the days

> that it took every minute of her day jumping through hoops;

> just to get his eyes to meet hers. She is still on this

> message board reading as we are telling everyone not to let

> their children stim. She lives in fear that what she has

> worked so hard to build will vanish.

>

> Let me tell you about a little gal that I watched go through

> these steps. She was a precious little gal with an extra

> chromosome who also had severe sensory problems. We had gone

> through the steps above on that continuum of development. A

> few years had gone by since we had seen the head shaking ,

> finger dancing , string twirling days. On the phone one day

> her mother had been telling me a great unit study that she

> had been doing with the American Girl series. Since I am the

> mother of 5 boys and don't get to see many dolls, I

> requested that she bring her wonderful little dolls to the

> next evaluation to share with me I will never forget when

> this precious little girl walked in with her expensive

> dolls...all with their heads shaved. I had to remind Mom

> that we had come a long way since the days that her daughter

> used to sit in the floor, rock back and forth and shake

> Barbie dolls to stim. I let her know that unless she was

> attempting to develop a deep compassion towards chemo

> patients, it would fine to let the little girl have dolls

> with hair.

>

> It is important to notice in this post that I refer to the

> SAME child throughout a continuum, and not different

> children. The point that I want to make, is that we want to

> take a child from where they are and progress forwards. If

> you are the mother of the child starting from point 1 on

> that line, you have a hard job,. But , your child can

> advance to the next step. We will do all that we know to

> help you take each and every step. If you are farther along

> on that continuum, do not be confused when you see various

> suggestions made to other parents, or even the ones that we

> made to you previously. Stay in touch with your support

> staff. Sometimes it helps for them to help you clarify if

> what you child is doing fits into the " odd " or " totally

> normal " category.

>

> Keep in mind, you do not go from step 1 to step 25

> overnight, but we are all just as anxious to help you get

> there as fast as possible!

>

> I hope this helps you all to understand that a

> recommendation for child " A " regarding stimming, may not be

> exactly the same for child " B " . And to add, what wonderful

> children each and every one of them!!!!

>

July 18, 2007

I think you're probably okay with this one. Stimming is

usually pretty noticeable and is decidedly odd behaviour.

Kids with a couple of odd things are not worrisome.

Janice

Re: [ ] Re: Stimming---how do you

help them stop this?

Date: Wed, 18 Jul 2007 02:27:45 +0000

> I think he is just playing along with his sisters. But I

> will watch more closely and see what he is looking at now

> when he does it. Ugh! I don't want to have to worry

> about anything else!

>

> -------------- Original message --------------

> From: " bscmommy " <stephanee_a@...>

> Is he looking at something particular as he runs? Maybe

> the floor, or the baseboards, or the back of the couch?

> My son used to do this BUT, his head would be sideways

> and he would be looking out of the corner of his eyes at

> something straight (backs of chairs, chair rail on wall,

> back of couch, kitchen countertop). If so, yes, this is a

> visual stim. I would stop him and have him look at

> something else/redirect. Interestingly enough, when I

> added Vitamin A 10,000 IU/day, this stopped completely on

> its own. When I backed off the A, it would appear again.

> I would think chasing his sisters would be a good thing,

> from an interaction standpoint. Unless, of course, he

> isn't following them and looking at them.

> Stephanee

> >

> > Okay, now I have another question after reading all this

> info. My son likes to run around the house. Back and

> forthusually laughing or just making sounds. Is this

> stimming? He will also run with his sisters when they are

> running around to try and play with them. But he will do

> this on his own. Now I am afraid this could be another

> > way he is stimming. Any thoughts?

> >

July 18, 2007

It's OK. It took me several weeks of reading posts and doing my own

Vitamin E research before I could wrap my head around what all of it

meant and what it might mean for us. Then before I gave him the

first dose I consulted his pediatrician and another doctor (who

happens to be my life-long best friend). When they both assured me

he wouldn't drop dead if I gave him 200IUs, I tried it and thankfully

had the wow! results that several people have had. Now I give him

higher doses than 200IUs and instead of fearing that it might hurt

him, I fear that a reason may arise where I could not give it to

him. We've experienced a few regressions over these months for

various reasons and it was enough for me to realize I never want to

go back there.

> >>

> >>>This is very interesting!! How much Vitamin E did you

supplement

> >>>

> >with? My boys do the exact same thing you described with your

son.

> >Very, very sensory seeking. They have no attention span to sit

and

> >properly play with toys. They are ALWAYS on the go! And it is

hard

> >for them to settle down for sleep too. I don't think they are

> >getting E in any of their supplements.

> >

> >>>

> >>> They have been diagnosed with sensory processing disorder.

> >>>

> >EVERYTHING is sensory for them.

> >

> >>>

> >>> I would love if something as simple as adding adequate amounts

> >>>

> >of Vit E would help with this.

> >

> >>>

> >>>Dana

> >>> and Garrett, 3 years old as of Mar 24

> >>>SCD One Year!!!!!

> >>>Celiac, ASD, Speech and Motor Apraxia, sensory processing

disorder

> >>>

> >>>---------------------------------

> >>>Ready for the edge of your seat? Check out tonight's top picks

on

> >>>

> > TV.

> >

> >>>

July 18, 2007

Both of my brands DO have soy in them. I don't endorse, but the

products I use are Vitamin World High Gamma Tocopherol (200IUs d-

alpha and 200mg d-gamma) and for extra d-alpha I use Soloray Vitamin

E (400IUs). So if you need soy free, you'll need to find something

else. Just make sure it is natural (denoted by the " d " . Synthetic

is denoted by " dl " ).

> >

> > Okay, now I have another question after reading all this info. My

> son likes to run around the house. Back and forthusually laughing

or

> just making sounds. Is this stimming? He will also run with his

> sisters when they are running around to try and play with them. But

> he will do this on his own. Now I am afraid this could be another

> way he is stimming. Any thoughts?

> >

> > -------------- Original message --------------

> > From: " Janice Hoover " <jscott@>

> >

> > Vicki,

> >

> > If I could tell you which sensory channels were broken and

> > how specifically to 'make it stop', I'd be a very rich woman

> > building my house next to Bill Gates for I would have the

> > cure to autism!

> >

> > There are two schools of thought on stimming, the school

> > where kids are allowed to do it because the teachers are

> > unable to physically stop the kids and so tell the parents

> > 'it's okay' and the REALITY which is...

> >

> > Stimming is what takes our children away from us and what I

> > believe in some ways differentiates disorders like dyspraxia

> > where the child is still social and still 'connected' with

> > our world from severe autism where a child has become locked

> > away in a world of 'self stimulation' thus our world has

> > become insignificant to him.

> >

> > The more a child stims, the more the child is leaving our

> > world and entering the world of sensory play. It is

> > addictive and the child REALLY WANTS IT so it is HARD to

> > take it away. But if I saw my child lighting up a crack

> > pipe, I certainly would take it away! Even if he was

> > already addicted!

> >

> > I have heard some people say that just redirecting the

> > behaviour works, deep pressure hugs work and changing up

> > what the child is doing. I was so lucky since Mark was

> > pretty much a true dyspraxic and his only stimmy behaviours

> > came from attending classes with kids who were doing it. I

> > knew to tell him 'absolutely not' and just tell him not to

> > do it and why it was bad for him. Sometimes he would do it

> > without thinking and I would intervene. In his case, it was

> > not very serious because he never got 'lost' in that world.

> >

> > Here are some posts from NACD message board on Stimming

> > including a definition of what it is. Post #1 gives you a

> > definition but post #5 really shows you what stimming 'is'!

> >

> > Janice

> >

> > #1

> >

> > Hi Everyone,

> >

> > Stimming is short for self-stimulatory behavior. It is

> > repetitive, non-productive behavior that stimulates a

> > sensory channel that is not being processed correctly. There

> > are quite a few different types of behavior that are stims.

> > The thing that they have in common is that they disrupt the

> > child's normal interaction with his or her environment.

> > " Normal " children and some adults engage in small amounts of

> > stimmy behaviors when tired, bored or stressed sometimes.

> > Whether a child is dangling shoestrings or sitting dazed

> > visualizing an entire Harry Potter movie or Barney video,

> > while they are involved in the stim, they are quite

> > indifferent to what is going on around them.Beyond this, it

> > is hard to generalize except to say that stimming takes our

> > children away from us, stops learning, and hurts social

> > interaction. It is often addictive behavior. "

> >

> > #2

> >

> > " Hi everyone! This is what I did to stop my son, ,

> > from stimming. I pulled all the blinds in the house and we

> > lived in darkness. We viewed t.v. this way and played

> > computer games this way. We did tons of pleoptics.

> > Everywhere I went, that flashlight went with me. I had no

> > problem taking it out in public and if would stim, I

> > would use it. I didn't let him out of my sight. Every time

> > he would stim, I would redirect him. If he was stimming with

> > toys, I would show him how to play right with them. You

> > basically have to stay on your child 24/7 and it is hard

> > work. My husband leaves the house at 6:30 AM and isn't back

> > until 7:00 PM so it was up to me. However, when my husband

> > was home, he wouldn't let stim either. That is very

> > important. If you are going to leave your child in somebody

> > else's care, they can't let them stim. The more they stim,

> > the harder it is to make them stop.

> >

> > My son used to stim by ripping up grass and throwing it,

> > rolling a ball or rocks down a slide and just watching it,

> > watching trains and cars go round and round, lining up stuff

> > animals and rolling them down the couch one by one. He also

> > used to like to chase his shadow, look at objects on the

> > wall and stare at ceiling fans.

> >

> > My blinds are now open, I can run my ceiling fans and my

> > sons knows not to stim. If he even glances up at the ceiling

> > fan, he will look right at me, shake his head and say " no

> > stim " .

> >

> > I have a real funny story. My mother just got a kitten. I

> > was playing with the kitten dragging a string and the cat

> > was naturally stalking it. Well, informs me " kitty

> > no stim " . I guess we got the message across pretty good!!!

> >

> > It took almost a year to get him to completely stop, it was

> > very hard, but very worth it. Once the stimming stops, you

> > see your child for the first time. They are a completely

> > different child and it is WONDERFUL.

> >

> > #3

> >

> > Novelty has intensity so novelty really does help a lot when

> > it comes to stopping stimming. Put out objects and toys that

> > are not seen very often and watch the stimming move closer

> > to being exploring. TV in darkened room can work. If you

> > happen to have a slide projector and some old slides, that

> > works in a darkened room. Toys that play music, make animal

> > noises, light up, talk, sing are all good as they have added

> > intensity.

> >

> > #4

> > There are many reasons why a child doesn't get it! Sometimes

> > it is due to inattention. Sometimes it is due to the child

> > not being able to or not wanting to really engage in

> > processing what you are talking about when you are reading.

> > Sometimes the children shut down when they anticipate that

> > you are going to ask a question right after you make a

> > statement. Some kids don't get it because they are stimming.

> > Some don't get it because they can't relate to some language

> > in a story.

> >

> > It would be specific to your child. I know that there are

> > plenty of parents out there that have kids that didn't get

> > it but now do. How we changed that may be different for many

> > of the children. It's not a one size fits all situation.

> > Processing is certainly a key issue, working memory,

> > stopping stimming behavior, increasing vocabulary, tonal

> > processing....the list is long. That's why the programs are

> > individual programs.

> > __________________

> >

> > #5

> >

> > Stimming in general

> >

> > ----------------------------------------------------------

> >

> > Please know that this particular post is not a

> > recommendation for a specific child, but rather, hopefully a

> > post that will help clear up some confusion. The one thing

> > that I have appreciated about NACD from the beginning is the

> > importance of seeing the child, not diagnosis.

> >

> > Stimming....first of all, EVERYBODY stims. The degree to

> > which it creates a problem is the degree where we start to

> > become concerned. Let me give you an example of a stim.

> > Early in the morning, as my first cup of Starbucks's French

> > Roast finishes dripping into the cup and I take that very

> > first sip, I stim. That first sip creates a euphoric

> > reaction that over the years has become addictive. Then

> > shortly after, I fix breakfast for the kids, I either head

> > off to the office for evals, or to the couch to begin the

> > homeschool day. That stim did not stop me from having an

> > effective day.

> > Considering that we are all on a continuum of development,

> > let's look at the other end of the spectrum.

> >

> > I stop and think about the most severe stimmer that I have

> > seen. As the day starts, early in the morning, he is already

> > ahead of the game. Since he sees so well in the dark, he has

> > spent the last several hours stimming on his black and white

> > sheets. He gets up out of bed and cruises through the house,

> > vocalizing specific frequencies that have no meaning in

> > language, watching as his world of baseboards and ceiling

> > fans do their trick on him. He is feeling that same rush of

> > euphoric emotion, but his doesn't stop and allow him to

> > understand the world that we live in. This is because, over

> > time, his global processing did not advance and so the world

> > as we know it has no meaning to him. His world is all about

> > creating those endorphins. The catch 22 is, as some of you

> > know, we can't increase the global processing if the

> > stimming prevails, and until we get the processing up, he

> > will choose, or even fight, to stim. This is the child with

> > no language, the child who does not feel pain if he bangs

> > his head on the ground. This is the child who doesn't see a

> > person as anyone that they want to interact with. After all,

> > at this place in the continuum, who needs people when you

> > have baseboards. For this child...the situation is extreme

> > so extreme measures must be taken if we want to pull him out

> > of that world and into ours. This may mean a totally

> > darkened house with the child sitting on our lap, as we

> > lovingly hold him a few feet from a 12 " " TV with videos we

> > have made to teach him a word to use. This is the child that

> > we recommend having a battery of warm bodies doing

> > activities that we have designed 24/7.

> >

> > Now, let's take a step forward in that continuum. That same

> > child has responded well to program and we have had enough

> > progress to actually have light in the house. He sees Mom

> > with all new eyes. Eyes that will actually meet and hold

> > contact for a few seconds throughout the day. This is the

> > child that has now learned to say " Mama " , " Movies " , " Eat " ,

> > and, of course, " No. " This is still a kid in the danger

> > zone. We need as many people as we can get interacting with

> > him. We have a long list of activities that we can do to

> > increase his language and processing abilities. The

> > wonderful thing is, he wants it now. See, people do have

> > something to offer and as long as they offer it, he will

> > engage in this world. The hard thing is, if engagement is

> > not being offered, there are always the baseboards and

> > corners of the room and doors that open and shut. Those

> > things still seem to do nicely as far as this child is

> > concerned, and they still have the ability to steel him away

> > from us. The nice thing is though; Mom no longer has to sit

> > with her arms wrapped around him in a dark room to get him

> > to look at a video. So we USE the TV as our standby

> > therapist. Is he still a 24/7? For sure probably still a 7

> > day kiddo, but maybe not a 24 hour. Mom does get to take a

> > bubble bath as long as there is a decent video running.

> >

> > Let's take some more steps forward and look at what happens.

> > Sensory channels are becoming more normalized. While he may

> > be easily distracted by movement in the peripheral field of

> > vision, he does not live there. Noises are no longer

> > painful, so the family can actually go to a restaurant

> > without too much fear. He is now speaking in phrases. or

> > even sentences, and will gladly communicate what he wants.

> > Processing is up some more so the meltdowns are less

> > frequent. Hopefully by now, there are a few toys or computer

> > games that he can do and actually enjoy. If we have done a

> > good job of rotating out videos so that he is not stuck only

> > on a specific Disney movie, we can decrease TV/Video. Mom

> > can actually have a conversation on the phone with Grandma

> > for a good chunk of time without fearing that she will loose

> > her son to a world that will not let him return. Are we out

> > of the woods? NO, unfortunately not. But, is it a 24/7

> > redirect? No. You have to look carefully at percentages of

> > appropriate and therapeutic input compared to the time spent

> > sneaking away to stim. If that is only for a short time, oh

> > well. If it is for hours or days, OH NO! I can vividly

> > remember once going away for a few days to conduct a

> > workshop when Evan was at this stage. I knew something was

> > up even before I saw him. My oldest son was playing in a

> > State Championship game that Sunday so instead of going

> > home, I left Houston and went straight to the ballpark. As I

> > got out of my car, I saw another mother on the team. Her

> > exact words were " What is wrong with Evan? I saw him this

> > morning and he didn't even speak. He has sat in the chair

> > rocking his head back and forth through the whole game and

> > has not said word. This is so not like him. Is he sick? "

> > You can imagine the first words I spoke to hubby who had

> > been left in charge for the week. It took me weeks to get

> > Evan's vision back to where it had been the day that I left,

> > and for days it was like working with a hung over drunk.

> > But, I did get him back. This is because he was far enough

> > along by this point and on the continuum.

> >

> > Now, more steps ahead. We have all done our work well. We

> > have a child whose processing is up. His language is fluent.

> > His independent time is spent looking more and more like

> > neuro-typical kids, and his visualization and

> > conceptualization are more balanced. Maybe this child still

> > deals with a little excess emotionality, or can get lost in

> > imaginary play, so we carefully watch his balance. We make

> > sure he gets enough non-fiction input and if we see alone in

> > the back yard with imaginary swords for too long, we call

> > him in to take out the trash. This is a child we still

> > watch, but this is also a Mom that we sometimes have to

> > remind her to go take that Bubble Bath. You see, she

> > remembers the days that he banged his head on the floor and

> > couldn't tell her that he was in pain because his ear drum

> > had ruptured. She remembers the days that his best friend

> > was a string that he carried around. She remembers the days

> > that it took every minute of her day jumping through hoops;

> > just to get his eyes to meet hers. She is still on this

> > message board reading as we are telling everyone not to let

> > their children stim. She lives in fear that what she has

> > worked so hard to build will vanish.

> >

> > Let me tell you about a little gal that I watched go through

> > these steps. She was a precious little gal with an extra

> > chromosome who also had severe sensory problems. We had gone

> > through the steps above on that continuum of development. A

> > few years had gone by since we had seen the head shaking ,

> > finger dancing , string twirling days. On the phone one day

> > her mother had been telling me a great unit study that she

> > had been doing with the American Girl series. Since I am the

> > mother of 5 boys and don't get to see many dolls, I

> > requested that she bring her wonderful little dolls to the

> > next evaluation to share with me I will never forget when

> > this precious little girl walked in with her expensive

> > dolls...all with their heads shaved. I had to remind Mom

> > that we had come a long way since the days that her daughter

> > used to sit in the floor, rock back and forth and shake

> > Barbie dolls to stim. I let her know that unless she was

> > attempting to develop a deep compassion towards chemo

> > patients, it would fine to let the little girl have dolls

> > with hair.

> >

> > It is important to notice in this post that I refer to the

> > SAME child throughout a continuum, and not different

> > children. The point that I want to make, is that we want to

> > take a child from where they are and progress forwards. If

> > you are the mother of the child starting from point 1 on

> > that line, you have a hard job,. But , your child can

> > advance to the next step. We will do all that we know to

> > help you take each and every step. If you are farther along

> > on that continuum, do not be confused when you see various

> > suggestions made to other parents, or even the ones that we

> > made to you previously. Stay in touch with your support

> > staff. Sometimes it helps for them to help you clarify if

> > what you child is doing fits into the " odd " or " totally

> > normal " category.

> >

> > Keep in mind, you do not go from step 1 to step 25

> > overnight, but we are all just as anxious to help you get

> > there as fast as possible!

> >

> > I hope this helps you all to understand that a

> > recommendation for child " A " regarding stimming, may not be

> > exactly the same for child " B " . And to add, what wonderful

> > children each and every one of them!!!!

> >

July 18, 2007

Liz

was always very cautions how she worded her statements. As a mom and a

doctor she had very mixed responsibilities. She had experiences in the past with

being misrepresented as a DR. She had to not share what was surely a miracle

for her son. She literally saw a miraculous recovery before her eyes (like that

movie Awakenings).

She has advocated for the supplements, but as an MD has always had to include a

disclaimer that what she was saying was not from a doctor, but from a fellow

MOM. Vit E is so poorly studied, and the studies that have been done are mostly

with synthetic (the " l " in dl tocoperol).

There are risks with Vit E but it is NOT understood. All the current research

shows that the level of supplementation most moms are giving is well within the

safe range.

If bleeding is a concern for you, your child's risk of bleeding can be monitored

with routine labwork (PT, PTT, INR). This lab work is an indication of how long

it takes to form a clot.

Some moms also supplement with Vit K, just in case.

Martha

Liz <lizlaw@...> wrote: Ok then

I misread a prior post I thought wrote about this issue