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My name is Christy and my daughter is 6 1/2 she had a tonsillectomy 2

years ago which improved her greatly. The exception to the improvement is her

stamina. She is in first grade and still needs to take naps frequently which is

a challenge being in school. We usually have her nap on Wednesday afternoon

because she gets out of school by 2 PM and then Saturday and Sunday. She also

still goes to be sometimes as early as 7:15P.

When she was younger we dealt with this by planning our lives around her sleep

needs. We to were criticized by friends and relatives but knew in our minds it

was the right thing to do because cycled more frequently without

adequate rest and for her adequate meant 15-16 hours per day between cycles and

often as much as 20 hours per day during a cycle. Take comfort in knowing you

are doing what is best for your child and remind people all children even

children without have different sleep needs. We also found that pediasure

was a great help because it at least helped keep 's weight form falling

off of the growth chart.

Christy Mom to 6 1/2

>>> sanguinettikaren@... 11/2/2006 10:04 AM >>>

From what I can tell, there are other parents of children with ,

that even between episodes, there children don't have the stamina. I

have been questioned why my daughter goes to bed so early. It used to

be by 6:00. The day was over. She can go as long as 8:00 sometimes

now.

I find it frustrating that people just don't understand. Then they

criticize that so and so's baby can stay up late, why can't yours.

I'm very interested in hearing how other parents have dealt with the

situation and what has worked for them on there children not having

the stamina or increasing it. Any particular vitamin (she is taking

one), food, etc. (We finally got her diagnosed two weeks ago. It took

persistance at the doctors office.)

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For those of you whose children suffer from lack of stamina I am curious to know

if they are anemic? Anemia can cause fatigue, my daughter 19mths (Pfapa ??) has

alot of stamina in between fevers however she sleeps anywhere from 11-13 hours a

night and then takes a 2-3 hour naps.And has done so since she was born. She

actually tells me when she is ready for bed or wants to take a nap ( A bit

refreshing I might add because I have a 3 1/2 year old who hates to sleep ) My

Ped said this could be from the anemia or she could just be a child that sleeps

well. I suffered from anemia so I know it causes fatigue. However most children

(depends on age) do sleep on average 12-16 hours and this is normal.

So for some it may just be normal or from low iron,, Just a thought.

But I would agree that extreme constant fatigue would warrant the Docs to take

another look to see if there is another underlying problem.

Tammielee

Re: stamina

My name is Christy and my daughter is 6 1/2 she had a tonsillectomy 2

years ago which improved her greatly. The exception to the improvement is her

stamina. She is in first grade and still needs to take naps frequently which is

a challenge being in school. We usually have her nap on Wednesday afternoon

because she gets out of school by 2 PM and then Saturday and Sunday. She also

still goes to be sometimes as early as 7:15P.

When she was younger we dealt with this by planning our lives around her sleep

needs. We to were criticized by friends and relatives but knew in our minds it

was the right thing to do because cycled more frequently without

adequate rest and for her adequate meant 15-16 hours per day between cycles and

often as much as 20 hours per day during a cycle. Take comfort in knowing you

are doing what is best for your child and remind people all children even

children without have different sleep needs. We also found that pediasure

was a great help because it at least helped keep 's weight form falling

off of the growth chart.

Christy Mom to 6 1/2

>>> sanguinettikaren 11/2/2006 10:04 AM >>>

From what I can tell, there are other parents of children with ,

that even between episodes, there children don't have the stamina. I

have been questioned why my daughter goes to bed so early. It used to

be by 6:00. The day was over. She can go as long as 8:00 sometimes

now.

I find it frustrating that people just don't understand. Then they

criticize that so and so's baby can stay up late, why can't yours.

I'm very interested in hearing how other parents have dealt with the

situation and what has worked for them on there children not having

the stamina or increasing it. Any particular vitamin (she is taking

one), food, etc. (We finally got her diagnosed two weeks ago. It took

persistance at the doctors office.)

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Just to clarify..... isn't like lethargic with fatigue, just tired out?

He is 13 in 8Th grade at a private school with honor classes and homework. I

think puberty plays a factor too. He does have what I call " post febrile

fatigue " for about a week after an episode. also is a mellow guy, pretty

laid back. Anyway just had to mention this.

Gretchen and

Tammielee Rebel <tlrebel@...> wrote:

For those of you whose children suffer from lack of stamina I am

curious to know if they are anemic? Anemia can cause fatigue, my daughter 19mths

(Pfapa ??) has alot of stamina in between fevers however she sleeps anywhere

from 11-13 hours a night and then takes a 2-3 hour naps.And has done so since

she was born. She actually tells me when she is ready for bed or wants to take a

nap ( A bit refreshing I might add because I have a 3 1/2 year old who hates to

sleep ) My Ped said this could be from the anemia or she could just be a child

that sleeps well. I suffered from anemia so I know it causes fatigue. However

most children (depends on age) do sleep on average 12-16 hours and this is

normal.

So for some it may just be normal or from low iron,, Just a thought.

But I would agree that extreme constant fatigue would warrant the Docs to take

another look to see if there is another underlying problem.

Tammielee

Re: stamina

My name is Christy and my daughter is 6 1/2 she had a tonsillectomy 2

years ago which improved her greatly. The exception to the improvement is her

stamina. She is in first grade and still needs to take naps frequently which is

a challenge being in school. We usually have her nap on Wednesday afternoon

because she gets out of school by 2 PM and then Saturday and Sunday. She also

still goes to be sometimes as early as 7:15P.

When she was younger we dealt with this by planning our lives around her sleep

needs. We to were criticized by friends and relatives but knew in our minds it

was the right thing to do because cycled more frequently without

adequate rest and for her adequate meant 15-16 hours per day between cycles and

often as much as 20 hours per day during a cycle. Take comfort in knowing you

are doing what is best for your child and remind people all children even

children without have different sleep needs. We also found that pediasure

was a great help because it at least helped keep 's weight form falling

off of the growth chart.

Christy Mom to 6 1/2

>>> sanguinettikaren 11/2/2006 10:04 AM >>>

From what I can tell, there are other parents of children with ,

that even between episodes, there children don't have the stamina. I

have been questioned why my daughter goes to bed so early. It used to

be by 6:00. The day was over. She can go as long as 8:00 sometimes

now.

I find it frustrating that people just don't understand. Then they

criticize that so and so's baby can stay up late, why can't yours.

I'm very interested in hearing how other parents have dealt with the

situation and what has worked for them on there children not having

the stamina or increasing it. Any particular vitamin (she is taking

one), food, etc. (We finally got her diagnosed two weeks ago. It took

persistance at the doctors office.)

__________________________________________________________

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I forgot to say too that has trouble falling asleep and doesn't sleep as

well as he used to especially during his episodes, and then has to get up early

for school. I think it has to do with the cimetidine?

Tammielee Rebel <tlrebel@...> wrote: For those of you whose

children suffer from lack of stamina I am curious to know if they are anemic?

Anemia can cause fatigue, my daughter 19mths (Pfapa ??) has alot of stamina in

between fevers however she sleeps anywhere from 11-13 hours a night and then

takes a 2-3 hour naps.And has done so since she was born. She actually tells me

when she is ready for bed or wants to take a nap ( A bit refreshing I might add

because I have a 3 1/2 year old who hates to sleep ) My Ped said this could be

from the anemia or she could just be a child that sleeps well. I suffered from

anemia so I know it causes fatigue. However most children (depends on age) do

sleep on average 12-16 hours and this is normal.

So for some it may just be normal or from low iron,, Just a thought.

But I would agree that extreme constant fatigue would warrant the Docs to take

another look to see if there is another underlying problem.

Tammielee

Re: stamina

My name is Christy and my daughter is 6 1/2 she had a tonsillectomy 2

years ago which improved her greatly. The exception to the improvement is her

stamina. She is in first grade and still needs to take naps frequently which is

a challenge being in school. We usually have her nap on Wednesday afternoon

because she gets out of school by 2 PM and then Saturday and Sunday. She also

still goes to be sometimes as early as 7:15P.

When she was younger we dealt with this by planning our lives around her sleep

needs. We to were criticized by friends and relatives but knew in our minds it

was the right thing to do because cycled more frequently without

adequate rest and for her adequate meant 15-16 hours per day between cycles and

often as much as 20 hours per day during a cycle. Take comfort in knowing you

are doing what is best for your child and remind people all children even

children without have different sleep needs. We also found that pediasure

was a great help because it at least helped keep 's weight form falling

off of the growth chart.

Christy Mom to 6 1/2

>>> sanguinettikaren 11/2/2006 10:04 AM >>>

From what I can tell, there are other parents of children with ,

that even between episodes, there children don't have the stamina. I

have been questioned why my daughter goes to bed so early. It used to

be by 6:00. The day was over. She can go as long as 8:00 sometimes

now.

I find it frustrating that people just don't understand. Then they

criticize that so and so's baby can stay up late, why can't yours.

I'm very interested in hearing how other parents have dealt with the

situation and what has worked for them on there children not having

the stamina or increasing it. Any particular vitamin (she is taking

one), food, etc. (We finally got her diagnosed two weeks ago. It took

persistance at the doctors office.)

__________________________________________________________

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No my daughter is not anemic has been at times but not constant. Christy

>>> tlrebel@... 11/2/2006 11:24 PM >>>

For those of you whose children suffer from lack of stamina I am curious to know

if they are anemic? Anemia can cause fatigue, my daughter 19mths (Pfapa ??) has

alot of stamina in between fevers however she sleeps anywhere from 11-13 hours a

night and then takes a 2-3 hour naps.And has done so since she was born. She

actually tells me when she is ready for bed or wants to take a nap ( A bit

refreshing I might add because I have a 3 1/2 year old who hates to sleep ) My

Ped said this could be from the anemia or she could just be a child that sleeps

well. I suffered from anemia so I know it causes fatigue. However most children

(depends on age) do sleep on average 12-16 hours and this is normal.

So for some it may just be normal or from low iron,, Just a thought.

But I would agree that extreme constant fatigue would warrant the Docs to take

another look to see if there is another underlying problem.

Tammielee

Re: stamina

My name is Christy and my daughter is 6 1/2 she had a tonsillectomy 2

years ago which improved her greatly. The exception to the improvement is her

stamina. She is in first grade and still needs to take naps frequently which is

a challenge being in school. We usually have her nap on Wednesday afternoon

because she gets out of school by 2 PM and then Saturday and Sunday. She also

still goes to be sometimes as early as 7:15P.

When she was younger we dealt with this by planning our lives around her sleep

needs. We to were criticized by friends and relatives but knew in our minds it

was the right thing to do because cycled more frequently without

adequate rest and for her adequate meant 15-16 hours per day between cycles and

often as much as 20 hours per day during a cycle. Take comfort in knowing you

are doing what is best for your child and remind people all children even

children without have different sleep needs. We also found that pediasure

was a great help because it at least helped keep 's weight form falling

off of the growth chart.

Christy Mom to 6 1/2

>>> sanguinettikaren 11/2/2006 10:04 AM >>>

From what I can tell, there are other parents of children with ,

that even between episodes, there children don't have the stamina. I

have been questioned why my daughter goes to bed so early. It used to

be by 6:00. The day was over. She can go as long as 8:00 sometimes

now.

I find it frustrating that people just don't understand. Then they

criticize that so and so's baby can stay up late, why can't yours.

I'm very interested in hearing how other parents have dealt with the

situation and what has worked for them on there children not having

the stamina or increasing it. Any particular vitamin (she is taking

one), food, etc. (We finally got her diagnosed two weeks ago. It took

persistance at the doctors office.)

________________________________________________________________________________\

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My son Mason has problems with stamina too. At this point NIH is leaning

towards a diagnosis of HIDS and he is having further bloodwork done to see

if they can find the gene. He also has a mutation of the CIAS1 gene.

Mason tends to be extremely fatigued during an episode and the fatigue can

happen much more often too. He's had a lot of fatigue for the past two

weeks ... mornings especially are a bear for him. Mostly he cries on and

off for the entire hour I'm trying to get him ready for school. He also

tells me that school is just too long ... and it truly is for a

kindergartener. He attends school from 8:00 and gets home at 4:00 ... so

its like he's putting in a whole day of work. He comes home completely

exhausted and many afternoons will take an hour or more long nap ... and

then still wakes up being very tired. He'll wake up to eat supper and

soon ready for bed again. Its like he never gets enough sleep and yet he

gets atleast 10+ hours each night.

His last bloodwork showed his iron as being good, but on the low end of

good ... if that makes sense. He's not anemic; however, if his numbers go

any lower he would be anemic. We pray that doesn't happen or he'll end up

with a feeding tube ... as he also has issues with weight gain and this is

one of the signs his Nutritionist is looking at as far as when or if he'll

need the feeding tube.

Other than the fatigue, currently he is doing pretty good. Joint pain as

been minimal, as has the headaches and diarrhea ... and the best part is

no fever with the symptoms.

But yes, we definitely see issues with stamina most of the time with him.

When they initially diagnosed him as having this was our biggest

question to them is why he is always so tired, why he isn't completely

well between episodes, etc. because as Fran and someone else had mentioned

.... kids are generally well between. If your child isn't, then they

don't have .

These PFS can be so confusing! If only they all had this very distinct

set of symptoms and rules to determine what exactly was causing each and I

guess this is what the NIH is working towards ... easier ways to diagnose

and treat.

Heidi

Mommy of Mason, 6 years old, possible HIDS, CIAS1 mutation, post sigmoid

colon resection and 2 other intestinal surgeries, asthma, GERD symptoms,

failure to thrive

Amber, 10 years old, asthmatic, anaphylaxis to Penicillin, and hearing loss

, 13 years old, migraine sufferer

and happily married to of 13 years

burg, Pennsylvania

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Our child too struggles with fatigue.... and kind of funny, I have never tried

to link that to the .... He was born with a heart condition and had full

heart repair at 4 months old, and now has a pacemaker, so I have always just

related it to that, but the Dr.'s kind of blow me off whenever I talk about

Brady being tired all the time, because of course clinically, his heart is fine.

So..... makes me wonder if it is more because of the ..... He is 8 and

sleeps 11 hours a night and still wakes up exhausted. Plays and runs, but gets

tired. We go to the mall, and still at 8 he wants to be carried because he gets

tired. Wouldn't it be great to just know if all these quirky symptoms are

connected.

Patti mother of Brady 8

sanguinettikaren <sanguinettikaren@...> wrote:

From what I can tell, there are other parents of children with ,

that even between episodes, there children don't have the stamina. I

have been questioned why my daughter goes to bed so early. It used to

be by 6:00. The day was over. She can go as long as 8:00 sometimes

now.

I find it frustrating that people just don't understand. Then they

criticize that so and so's baby can stay up late, why can't yours.

I'm very interested in hearing how other parents have dealt with the

situation and what has worked for them on there children not having

the stamina or increasing it. Any particular vitamin (she is taking

one), food, etc. (We finally got her diagnosed two weeks ago. It took

persistance at the doctors office.)

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  • 11 months later...

Yes, very interesting. My son is 18 and a sign spinner, a perfect job for an aspie - no dealing with the public, money, etc. Anyway, he works 4-5 hour shifts (I park nearby) and he comes home soooo exhausted - you would think he ran a marathon. He complains of backaches, fatigue, etc. When he was younger we joked that he could never work manual labor, but this is hilarious! At least he is working and contributing to society! And when he gets his paychecks it seems genuinely worthwhile to him. rostevik <rostevik@...> wrote: I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/. - proud parent of 17 year old boy with AS __________________________________________________

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How awesome.....and, that would be great for him; and, from what I know, it is good money too...isn't for construction? The stop, go sign thing? And, he is working. AMEN!!! Isn't that what we all want for our kiddos?? Good for him!! (and for you.....)

Ruthie

Re: ( ) Stamina

Yes, very interesting. My son is 18 and a sign spinner, a perfect job for an aspie - no dealing with the public, money, etc. Anyway, he works 4-5 hour shifts (I park nearby) and he comes home soooo exhausted - you would think he ran a marathon. He complains of backaches, fatigue, etc. When he was younger we joked that he could never work manual labor, but this is hilarious! At least he is working and contributing to society! And when he gets his paychecks it seems genuinely worthwhile to him. rostevik <rostevikgmail> wrote:

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/. - proud parent of 17 year old boy with AS __________________________________________________

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has never ridden a two wheeler. She got a mountain bike for Christmas one year and never used it.

Deb

In a message dated 10/26/2007 10:37:21 P.M. Eastern Daylight Time, DOLEZAL123@... writes:

WOW---that is great, ROXANNA!!! I told you guys ROXANNA ROCKS!!! We missed you this week....(seems like you posted less than normal----?--maybe not??).

What a great thought.......thoughts, that is. WOW!!! I do agree with you, though; my 13 year old was about 7 when he finally rode a bike without training wheels, and that was because we spent endless hours, and my dad spent a week camping with him (and my mom) and that is all grandpa and did ALL WEEK---he was on a mission to make that boy ride his bike, and a few scrapes and grandpa's running along with him and a week, he did it but it was only because if that!! It took a long time (and he had all kinds of such toys and lots of one-on-one time-- everything is just slower with our kiddos!!

And, our six-and-a half year old son with aspies is STILL training wheels it. He is the most energetic thing you have ever seen, and does not know how to walk (he runs and is loud like an elephant about it------everywhere he goes)---darting here and darting there without a care in the world, but he is very uncoordinated and our wreckless one that has had broken collar bones, cut lips (needing stitches) 'cuz he does not know the word STOP (and then it's too late-----)----never cries when he is hurt, so if he does, (like when he broke his collar bone then the other one about six months later) you best go to the hospital---he was not crying that badly either!

Thanks for the insight, Roxanna.....

Ruthie

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

Debbie SalernoMaine Coon RescueBoard MemberDNA ManagerEastern Regional DirectorVice Presidentwww.mainecoonrescue.netSee what's new at AOL.com and Make AOL Your Homepage.

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WOW---that is great, ROXANNA!!! I told you guys ROXANNA ROCKS!!! We missed you this week....(seems like you posted less than normal----?--maybe not??).

What a great thought.......thoughts, that is. WOW!!! I do agree with you, though; my 13 year old was about 7 when he finally rode a bike without training wheels, and that was because we spent endless hours, and my dad spent a week camping with him (and my mom) and that is all grandpa and did ALL WEEK---he was on a mission to make that boy ride his bike, and a few scrapes and grandpa's running along with him and a week, he did it but it was only because if that!! It took a long time (and he had all kinds of such toys and lots of one-on-one time-- everything is just slower with our kiddos!!

And, our six-and-a half year old son with aspies is STILL training wheels it. He is the most energetic thing you have ever seen, and does not know how to walk (he runs and is loud like an elephant about it------everywhere he goes)---darting here and darting there without a care in the world, but he is very uncoordinated and our wreckless one that has had broken collar bones, cut lips (needing stitches) 'cuz he does not know the word STOP (and then it's too late-----)----never cries when he is hurt, so if he does, (like when he broke his collar bone then the other one about six months later) you best go to the hospital---he was not crying that badly either!

Thanks for the insight, Roxanna.....

Ruthie

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

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Roxanna,

Just a quick note to say "thank you" for the thorough reply. I'll take the time to read it more closely later when I've got more time :-)

Take care,

Rannveig/.

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

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thank you for this post!!! we've been having issues with saber in school where he seems to be unable to sit crosslegged at circle time, which then results in him having a meltdown because he cant physically do it. he can climb up & down a ladder, knows how to ride his bike but WONT. i am trying to get him motivated to do things that are more active. he doesnt even like to go for a walk around the block with the dog. i talked to his dr about this she doesnt seem to be concerned...i was thinking about teaching him to walk on the treadmill downstairs (at like .5 mph) just to get some energy out. has anyone tried yoga with their kids? has it worked? i was thinking about it to maybe stretch out some tight muscles, but not sure where to startRoxanna <madideas@...> wrote: I don't know why it's a problem. I have ideas of my own. It is a problem for a lot of kids with autism/AS. Some kids with hfa/AS have very lax joints. These kids will sit in a squating position (W position) for instance, have "double jointed" fingers and so forth. Ever see these kids walk? They have an odd gait. See them run? They will often hold their arms inward at their side when they run and not use their arms to pump themselves forward. A teacher once asked me if my older ds had CP because of the odd way he ran without moving his arms. He would hold his

arms in a fist and carry them around his stomach area. Part of the problem could be lack of proper use compared to "typical" kids. I mean, while other kids are outside riding bikes, many kids with autism/AS are not! They have issues with proprioception - knowing where their body position is in relation to their surroundings. One of my ds's used to run into doorways a lot, not be able to know he has to move when walking in the store - not being able to plan how he will get through a busy aisle of people. Ever try to push your cart in the store but your child doesn't think about having to move in from the side once in a while to manuever through a crowded spot? Many can't ride bikes and similar activities because they have a hard time with motor planning. One of my ds's had a hard time learning to walk up and down stairs. I have a friend whose son has autism and they say he is "ground bound" - meaning he has to have a foot on the ground at all times. He is not out there hoping and skipping and running up and down stairs. Another little guy I know has terrible fine and gross motor skills. He also does not play with toys at all - none. His calves are rock solid for all his toe walking and his hands have stamina for hand flapping purposes. But he doesn't ride his bike or use his muscles to move around the floor rolling cars, swing himself, jump up and down, play tag, etc. So

these kids are not using these muscles - perhaps it causes the fatigue through lack of use? Or does the fatigue cause them not to do these things? I don't know! But I do think the problem varies depending upon the severity in each person - like all symptoms of autism. What to do about it? I don't know. I would encourage a lot of physical activity to increase endurance but more importantly, to find physical activities they would enjoy and be good at long term. And that probably means helping the kids learn "how" to do things that we might assume they should know how to do automatically. With my older ds with hfa, he does not run. I remember a fun conversation with the high school PE teacher as she "informed" me one time that he "refused" to run. I mean, when asked, he will say, "I don't

run." He means that. <G> OT can help with fine motor skills and improving muscles used there. I wish we had spent more time teaching him how to do things - how to throw a ball, for instance, instead of just handing him a ball and letting him stand there perplexed. Or letting him throw it akwardly. It would have helped his planning to teach him how to use a full range of motions, IMO. But who knows how much that would help him today? I don't know. There is probably a social component to this as well to where these kids say "I don't care if I don't know how." lol. Mental exhaustion is a good thing to mention here too, as you did! Mentally, our kids can be depressed and that can cause them to not want to move as much. Anxiety can cause them to not want to move as

well, especially if they are not sure where their body parts are going to land if they try something physical and new to them. I also think in autism, some kids will shut down and "check out" to escape a lot of things. This can be viewed as being lazy, uncooperative, defiant, etc. But if tuning in is really hard work, then it could be a coping mechanism that they use when things have built up. For instance, I was reading something the other day about autism and how we typically can filter many things out in order to function during the day. They used socks as an example. So we put socks on and we instantly comprehend how they feel and filter that out to focus on other things. Then people with autism are not always able to filter these things out or do so imperfectly. So they put on that sock and it

is there, on their foot, hanging crooked on the little toe, slouching down the leg or whatever it is that they are thinking. The point is, they are not filtering this out in order to move on with their day. So if you imagine going through the day like this, it would make tuning in hard work! I had something else to write but I forgot! But these are just some ideas on the topic. RoxannaAutism Happens ( ) Stamina I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/. __________________________________________________

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I always wonder about doctors that DON'T SEEM TO BE CONCERNED? the next time I'm concerned about something, and the doctor isn't concerned, I'm going to ask them why they're not concerned and listen to what they have to say. which leads to what I need to say. When my son was younger almost 2 and I told the doctor he doesn't talk (was already in early interventions, but Dr. didn't know that) the doctor told me its OK, to wait, boys take longer. Well that's a Hugh myth!!. I remember my grandmother use to say that same thing. So the next time the doctor doesn't seem concerned, ask why, to see his reasoning and then you can decide if you need another doctor...Dee DiMemmo <craftychick70@...> wrote: thank you for this post!!! we've been having issues with saber in school where he seems to be unable to sit crosslegged at circle time, which then results in him having a meltdown because he cant physically do it. he can climb up & down a ladder, knows how to ride his bike but WONT. i am trying to get him motivated to do things that are more active. he doesnt even like to go for a walk around the block with the dog. i talked to his dr about this she doesnt seem to be concerned...i was thinking about teaching him to walk on the treadmill downstairs (at like .5 mph) just to get some energy out. has anyone tried yoga with their kids? has it worked? i was thinking about it to maybe stretch out some

tight muscles, but not sure where to startRoxanna <madideaszoominternet (DOT) net> wrote: I don't know why it's a problem. I have ideas of my own. It is a problem for a lot of kids with autism/AS. Some kids with hfa/AS have very lax joints. These kids will sit in a squating position (W position) for instance, have "double jointed" fingers and so forth. Ever see these kids walk? They have an odd gait. See them run? They will often hold their arms inward at their side when they run and not use their arms to pump themselves forward. A teacher once asked me if my older ds had CP because of the odd way he ran without moving his arms. He would hold his arms in a fist and carry them around his stomach area. Part of the problem could be lack of proper use compared to "typical" kids. I mean, while other kids are outside riding bikes, many kids with autism/AS are not! They have issues with proprioception - knowing where their body position is in relation to their surroundings. One of my ds's used to run into doorways a lot, not be able to know he has to move when walking in the store - not being able to plan how he will get through a busy aisle of people. Ever try to push your cart in the store but your child doesn't think about having to move in from the side once in a while to manuever through a crowded spot? Many can't

ride bikes and similar activities because they have a hard time with motor planning. One of my ds's had a hard time learning to walk up and down stairs. I have a friend whose son has autism and they say he is "ground bound" - meaning he has to have a foot on the ground at all times. He is not out there hoping and skipping and running up and down stairs. Another little guy I know has terrible fine and gross motor skills. He also does not play with toys at all - none. His calves are rock solid for all his toe walking and his hands have stamina for hand flapping purposes. But he doesn't ride his bike or use his muscles to move around the floor rolling cars, swing himself, jump up and down, play tag, etc. So these kids are not using these muscles - perhaps it causes the fatigue through lack of

use? Or does the fatigue cause them not to do these things? I don't know! But I do think the problem varies depending upon the severity in each person - like all symptoms of autism. What to do about it? I don't know. I would encourage a lot of physical activity to increase endurance but more importantly, to find physical activities they would enjoy and be good at long term. And that probably means helping the kids learn "how" to do things that we might assume they should know how to do automatically. With my older ds with hfa, he does not run. I remember a fun conversation with the high school PE teacher as she "informed" me one time that he "refused" to run. I mean, when asked, he will say, "I don't run." He means that. <G> OT can help with fine motor skills and

improving muscles used there. I wish we had spent more time teaching him how to do things - how to throw a ball, for instance, instead of just handing him a ball and letting him stand there perplexed. Or letting him throw it akwardly. It would have helped his planning to teach him how to use a full range of motions, IMO. But who knows how much that would help him today? I don't know. There is probably a social component to this as well to where these kids say "I don't care if I don't know how." lol. Mental exhaustion is a good thing to mention here too, as you did! Mentally, our kids can be depressed and that can cause them to not want to move as much. Anxiety can cause them to not want to move as well, especially if they are not sure where their body parts are going to land if they try

something physical and new to them. I also think in autism, some kids will shut down and "check out" to escape a lot of things. This can be viewed as being lazy, uncooperative, defiant, etc. But if tuning in is really hard work, then it could be a coping mechanism that they use when things have built up. For instance, I was reading something the other day about autism and how we typically can filter many things out in order to function during the day. They used socks as an example. So we put socks on and we instantly comprehend how they feel and filter that out to focus on other things. Then people with autism are not always able to filter these things out or do so imperfectly. So they put on that sock and it is there, on their foot, hanging crooked on the little toe, slouching down the leg or

whatever it is that they are thinking. The point is, they are not filtering this out in order to move on with their day. So if you imagine going through the day like this, it would make tuning in hard work! I had something else to write but I forgot! But these are just some ideas on the topic. RoxannaAutism Happens ( ) Stamina I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/. __________________________________________________

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I remember this book as having good information on low muscle

tone and poor stamina:

Physical activities for improving children's learning and behavior :

a guide to sensory motor development / e Ann Cheatum, A. Hammond.

Willa

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she told the bps that since there were developmental issues not to worry...apparently there was some sort of pt eval done at some point in time and it wasn't an issue then. i am concerned and when we go for his next exam i am going to bring it up again. its very frustrating because i'm coming in midstream here with all this, and the dr is all like well its been discussed before. my concern is i don't really think anyone had saber's best interests in mind and werent as focused on him as we are. but thats just the psychomom in me talkingRose <beachbodytan2002@...> wrote: I always wonder about doctors that DON'T SEEM TO BE CONCERNED? the next time I'm concerned about something, and the doctor isn't concerned, I'm going to ask them why they're not concerned and listen to what they have to say. which leads to what I need to say. When my son was younger almost 2 and I told the doctor he doesn't talk (was already in early interventions, but Dr. didn't know that) the doctor told me its OK, to wait, boys take longer. Well that's a Hugh myth!!. I remember my grandmother use to say that same thing. So the next time the doctor doesn't seem concerned, ask why, to see his reasoning and then you can decide if you need another doctor...Dee DiMemmo <craftychick70 > wrote: thank you for

this post!!! we've been having issues with saber in school where he seems to be unable to sit crosslegged at circle time, which then results in him having a meltdown because he cant physically do it. he can climb up & down a ladder, knows how to ride his bike but WONT. i am trying to get him motivated to do things that are more active. he doesnt even like to go for a walk around the block with the dog. i talked to his dr about this she doesnt seem to be concerned...i was thinking about teaching him to walk on the treadmill downstairs (at like .5 mph) just to get some energy out. has anyone tried yoga with their kids? has it worked? i was thinking about it to maybe stretch out some tight muscles, but not sure where to startRoxanna <madideaszoominternet (DOT) net> wrote: I don't know why it's a problem. I have ideas of my own. It is a problem for a lot of kids with autism/AS. Some kids with hfa/AS have very lax joints. These kids will sit in a squating position (W position) for instance, have "double jointed" fingers and so forth. Ever see these kids walk? They have an odd gait. See them run? They will often hold their arms inward at their side when they run and not use their arms to pump themselves forward. A teacher once asked me if my older ds had CP because of the odd way he ran without moving his arms. He would hold his arms in a fist and carry them around his stomach area. Part of the problem could be lack of proper use compared to "typical" kids. I mean, while other kids are outside riding bikes, many kids with

autism/AS are not! They have issues with proprioception - knowing where their body position is in relation to their surroundings. One of my ds's used to run into doorways a lot, not be able to know he has to move when walking in the store - not being able to plan how he will get through a busy aisle of people. Ever try to push your cart in the store but your child doesn't think about having to move in from the side once in a while to manuever through a crowded spot? Many can't ride bikes and similar activities because they have a hard time with motor planning. One of my ds's had a hard time learning to walk up and down stairs. I have a friend whose son has autism and they say he is "ground bound" - meaning

he has to have a foot on the ground at all times. He is not out there hoping and skipping and running up and down stairs. Another little guy I know has terrible fine and gross motor skills. He also does not play with toys at all - none. His calves are rock solid for all his toe walking and his hands have stamina for hand flapping purposes. But he doesn't ride his bike or use his muscles to move around the floor rolling cars, swing himself, jump up and down, play tag, etc. So these kids are not using these muscles - perhaps it causes the fatigue through lack of use? Or does the fatigue cause them not to do these things? I don't know! But I do think the problem varies depending upon the severity in each person - like all symptoms of autism. What to do about it? I don't know. I would encourage a lot of physical activity to increase endurance but more importantly, to find physical activities they would enjoy and be good at long term. And that probably means helping the kids learn "how" to do things that we might assume they should know how to do automatically. With my older ds with hfa, he does not run. I remember a fun conversation with the high school PE teacher as she "informed" me one time that he "refused" to run. I mean, when asked, he will say, "I don't run." He means that. <G> OT can help with fine motor skills and improving muscles used there. I wish we had spent more time teaching him how to do things - how to throw a ball, for instance, instead of just handing him a ball and letting him stand there perplexed. Or letting him throw it akwardly.

It would have helped his planning to teach him how to use a full range of motions, IMO. But who knows how much that would help him today? I don't know. There is probably a social component to this as well to where these kids say "I don't care if I don't know how." lol. Mental exhaustion is a good thing to mention here too, as you did! Mentally, our kids can be depressed and that can cause them to not want to move as much. Anxiety can cause them to not want to move as well, especially if they are not sure where their body parts are going to land if they try something physical and new to them. I also think in autism, some kids will shut down and "check out" to escape a lot of things. This can be viewed as being lazy, uncooperative, defiant, etc. But if tuning in is really hard work, then it

could be a coping mechanism that they use when things have built up. For instance, I was reading something the other day about autism and how we typically can filter many things out in order to function during the day. They used socks as an example. So we put socks on and we instantly comprehend how they feel and filter that out to focus on other things. Then people with autism are not always able to filter these things out or do so imperfectly. So they put on that sock and it is there, on their foot, hanging crooked on the little toe, slouching down the leg or whatever it is that they are thinking. The point is, they are not filtering this out in order to move on with their day. So if you imagine going through the day like this, it would make tuning in hard work! I had something else to write but I forgot! But these are just some ideas on the topic. RoxannaAutism Happens ( ) Stamina I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/. __________________________________________________

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SOUNDS LIKE YOUR INSTINCTS ARE VERY CORRECT. she told the bps that since there were developmental issues not to worry...Why not!!apparently there was some sort of pt eval done at some point in time and it wasn't an issue then.Doesn't mean the person that did the PT eval was good/right. get another eval if you feel they missed something. i am concerned and when we go for his next exam i am going to bring it up again. its very frustrating because I'm coming in midstream here with all this, and the Dr is all like well its been discussed before.Sounds like he's not doing anything or more like he's passing this onto someone else, you. my concern is i don't really think anyone had saber's best interests in mindWith that said, its time for another

doctor/eval. follow your instincts, they are always right. and werent as focused on him as we are. but that's just the psychomom in me talking No, that's a mother that knows her child best!!. I had a sensory testing done with my son and they said he's fine. after speaking with her and telling her what my sons sensory craves are and some of the things I'm already doing with him. Including at night using a weighted blanket to help him sleep. she never heard of it, and wanted more information on the blanket. even called me at home asking about the information. I took him to another person to do sensory testing and she gave me a report that was 5 pages long with recommendations with things I needed at home to help with his issues. also explained why it's needed. So sometimes, when things don't feel right - there

not...you know your child best.. Rose Dee DiMemmo <craftychick70@...> wrote: she told the bps that since there were developmental issues not to worry...apparently there was some sort of pt

eval done at some point in time and it wasn't an issue then. i am concerned and when we go for his next exam i am going to bring it up again. its very frustrating because i'm coming in midstream here with all this, and the dr is all like well its been discussed before. my concern is i don't really think anyone had saber's best interests in mind and werent as focused on him as we are. but thats just the psychomom in me talkingRose <beachbodytan2002 > wrote: I always wonder about doctors that DON'T SEEM TO BE CONCERNED? the next time I'm concerned about something, and the doctor isn't concerned, I'm going to ask them why they're not concerned and listen to what they have to say. which leads to what I need to say. When my son was younger almost 2 and I told the doctor he doesn't talk (was already in early

interventions, but Dr. didn't know that) the doctor told me its OK, to wait, boys take longer. Well that's a Hugh myth!!. I remember my grandmother use to say that same thing. So the next time the doctor doesn't seem concerned, ask why, to see his reasoning and then you can decide if you need another doctor...Dee DiMemmo <craftychick70 > wrote: thank you for this post!!! we've been having issues with saber in school where he seems to be unable to sit crosslegged at circle time, which then results in him having a meltdown because he cant physically do it. he can climb up & down a ladder, knows how to ride his bike but WONT. i am trying to get him motivated to do things that are more active. he doesnt even like to go for a walk around the block with the dog. i talked to

his dr about this she doesnt seem to be concerned...i was thinking about teaching him to walk on the treadmill downstairs (at like .5 mph) just to get some energy out. has anyone tried yoga with their kids? has it worked? i was thinking about it to maybe stretch out some tight muscles, but not sure where to startRoxanna <madideaszoominternet (DOT) net> wrote: I don't know why it's a problem. I have ideas of my own. It is a problem for a lot of kids with autism/AS. Some kids with hfa/AS have very lax joints. These kids will sit in a squating position (W position) for instance, have "double jointed" fingers and so forth. Ever see these kids walk? They have an odd gait. See them run? They will often hold their arms inward at their side when

they run and not use their arms to pump themselves forward. A teacher once asked me if my older ds had CP because of the odd way he ran without moving his arms. He would hold his arms in a fist and carry them around his stomach area. Part of the problem could be lack of proper use compared to "typical" kids. I mean, while other kids are outside riding bikes, many kids with autism/AS are not! They have issues with proprioception - knowing where their body position is in relation to their surroundings. One of my ds's used to run into doorways a lot, not be able to know he has to move when walking in the store - not being able to plan how he will get through a busy aisle of people. Ever try to push your cart in the store but your child doesn't think about having to move in from the side once in a while

to manuever through a crowded spot? Many can't ride bikes and similar activities because they have a hard time with motor planning. One of my ds's had a hard time learning to walk up and down stairs. I have a friend whose son has autism and they say he is "ground bound" - meaning he has to have a foot on the ground at all times. He is not out there hoping and skipping and running up and down stairs. Another little guy I know has terrible fine and gross motor skills. He also does not play with toys at all - none. His calves are rock solid for all his toe walking and his hands have stamina for hand flapping purposes. But he doesn't ride his bike or use his muscles to move around the floor rolling

cars, swing himself, jump up and down, play tag, etc. So these kids are not using these muscles - perhaps it causes the fatigue through lack of use? Or does the fatigue cause them not to do these things? I don't know! But I do think the problem varies depending upon the severity in each person - like all symptoms of autism. What to do about it? I don't know. I would encourage a lot of physical activity to increase endurance but more importantly, to find physical activities they would enjoy and be good at long term. And that probably means helping the kids learn "how" to do things that we might assume they should know how to do automatically. With my older ds with hfa,

he does not run. I remember a fun conversation with the high school PE teacher as she "informed" me one time that he "refused" to run. I mean, when asked, he will say, "I don't run." He means that. <G> OT can help with fine motor skills and improving muscles used there. I wish we had spent more time teaching him how to do things - how to throw a ball, for instance, instead of just handing him a ball and letting him stand there perplexed. Or letting him throw it akwardly. It would have helped his planning to teach him how to use a full range of motions, IMO. But who knows how much that would help him today? I don't know. There is probably a social component to this as well to where these kids say "I don't care if I don't know how." lol. Mental exhaustion is a good

thing to mention here too, as you did! Mentally, our kids can be depressed and that can cause them to not want to move as much. Anxiety can cause them to not want to move as well, especially if they are not sure where their body parts are going to land if they try something physical and new to them. I also think in autism, some kids will shut down and "check out" to escape a lot of things. This can be viewed as being lazy, uncooperative, defiant, etc. But if tuning in is really hard work, then it could be a coping mechanism that they use when things have built up. For instance, I was reading something the other day about autism and how we typically can filter many things out in order to function during the day. They used socks as an example. So we put socks on and we instantly comprehend how they

feel and filter that out to focus on other things. Then people with autism are not always able to filter these things out or do so imperfectly. So they put on that sock and it is there, on their foot, hanging crooked on the little toe, slouching down the leg or whatever it is that they are thinking. The point is, they are not filtering this out in order to move on with their day. So if you imagine going through the day like this, it would make tuning in hard work! I had something else to write but I forgot! But these are just some ideas on the topic. RoxannaAutism Happens ( ) Stamina I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I

thought this was an interesting perspective...Rannveig/. __________________________________________________

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Hi Ruthie,

Nice to be missed! I have been having a less than nice conversation with the middle school this week and it is causing me to get behind in reading emails. My 11 yo is having a major turn for the worse in middle school and if it isn't one problem, it is another. It really wears me down - as you all know! argh!!

My 11 yo took forever to learn how to ride his bike. He has good motor skills really but poor motor planning. So what he did was get on his bike but not peddle - instead he ran his bike up and down the street. It was really very odd to watch. I mean, so cute to us mother's of kids with autism...but I know all those "NT" people were watching and thinking - what a weird kid! It did look weird, I must say.

Our oldest ds was that way with running - he ran before he walked, we have always said. He only had stitches once but lots of scars.

RoxannaAutism Happens

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

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Sorry, Roxanna! I know all about the junior high school garbage!!! If they sign us out for open-enrollment, we are all done (of course, we were hoping to get papers in the mail today saying it was done, but no such luck). We are open-enrolling out due to 'GOOD CAUSE'--and enrolling into a school nearby that has a homeschooling program; our son is actually WANTING TO LEARN NOW and doing the work I give him on and off all day, and wants to do it (does more than asked / does elaborate details, and is doing it on HIS TIME, very neat (not messy like he does at school---because he can take him time and do it perfect like he wants to), and very complete; he is still talking this weekend about everything we learned all week. I thought I would hate it, and all the time in prepping for it, but somehow, I am making it happen, keeping things in order in the home better, still working 50-60 hours a week at my home daycare, and LOVING THIS HOMESCHOOLING thing. I am very surprised, and encouraged; my child is back, so it is worth it.

GOOD LUCK with the school stuff! We still have one at school, but he does not have an IEP or anything yet; they MEET HIS NEEDS without one, and his behaviors at school are VERY GOOD (you know that is weird how they can do that---he saves it for us---lucky us----but that is fine, too)......have a great rest of the weekend.

Ruthie

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

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Really, good point. I've mentioned my son's leg issues before, and

we're sort of given the 'well, we could run a lot of tests, but...'

I don't want a lot of tests, but the alternative is that we just deal

with it? How many years will he need a stroller? How many years will he

have to plop to the ground when waiting in line or just at the store,

because his legs hurt and he can't walk anymore, or is just plain too

tired?

Rose wrote:

I always wonder about doctors that DON'T SEEM TO BE CONCERNED?

the next time I'm concerned about something, and the doctor isn't

concerned, I'm going to ask them why they're not concerned and listen

to what they have to say. which leads to what I need to say.

When my son was younger almost 2 and I told the doctor he

doesn't talk (was already in early interventions, but Dr. didn't know

that) the doctor told me its OK, to wait, boys take longer. Well

that's a Hugh myth!!. I remember my grandmother use to say that same

thing.

So the next time the doctor doesn't seem concerned, ask why, to

see his reasoning and then you can decide if you need another doctor...

Dee DiMemmo <craftychick70 > wrote:

thank you for this post!!!

we've been having issues with saber in school where he seems

to be unable to sit crosslegged at circle time, which then results in

him having a meltdown because he cant physically do it. he can climb up

& down a ladder, knows how to ride his bike but WONT. i am trying

to get him motivated to do things that are more active. he doesnt even

like to go for a walk around the block with the dog.

i talked to his dr about this she doesnt seem to be

concerned...i was thinking about teaching him to walk on the

treadmill downstairs (at like .5 mph) just to get some energy out.

has anyone tried yoga with their kids? has it worked? i was

thinking about it to maybe stretch out some tight muscles, but not sure

where to start

Roxanna <madideaszoominternet (DOT) net> wrote:

I don't know why

it's a problem. I have ideas of my own. It is a problem for a lot of

kids with autism/AS. Some kids with hfa/AS have very lax joints.

These kids will sit in a squating position (W position) for instance,

have "double jointed" fingers and so forth. Ever see these kids walk?

They have an odd gait. See them run? They will often hold their arms

inward at their side when they run and not use their arms to pump

themselves forward. A teacher once asked me if my older ds had CP

because of the odd way he ran without moving his arms. He would hold

his arms in a fist and carry them around his stomach area.

Part of the

problem could be lack of proper use compared to "typical" kids. I

mean, while other kids are outside riding bikes, many kids with

autism/AS are not! They have issues with proprioception - knowing

where their body position is in relation to their surroundings. One of

my ds's used to run into doorways a lot, not be able to know he has to

move when walking in the store - not being able to plan how he will get

through a busy aisle of people. Ever try to push your cart in the

store but your child doesn't think about having to move in from the

side once in a while to manuever through a crowded spot?

Many can't ride

bikes and similar activities because they have a hard time with motor

planning. One of my ds's had a hard time learning to walk up and down

stairs. I have a friend whose son has autism and they say he is

"ground bound" - meaning he has to have a foot on the ground at all

times. He is not out there hoping and skipping and running up and down

stairs. Another little guy I know has terrible fine and gross motor

skills. He also does not play with toys at all - none. His calves are

rock solid for all his toe walking and his hands have stamina for hand

flapping purposes. But he doesn't ride his bike or use his muscles to

move around the floor rolling cars, swing himself, jump up and down,

play tag, etc.

So these kids are

not using these muscles - perhaps it causes the fatigue through lack of

use? Or does the fatigue cause them not to do these things? I don't

know! But I do think the problem varies depending upon the severity in

each person - like all symptoms of autism.

What to do about

it? I don't know. I would encourage a lot of physical activity to

increase endurance but more importantly, to find physical activities

they would enjoy and be good at long term. And that probably means

helping the kids learn "how" to do things that we might assume they

should know how to do automatically. With my older ds with hfa, he

does not run. I remember a fun conversation with the high school PE

teacher as she "informed" me one time that he "refused" to run. I

mean, when asked, he will say, "I don't run." He means that.

<G> OT can help with fine motor skills and improving muscles

used there. I wish we had spent more time teaching him how to do

things - how to throw a ball, for instance, instead of just handing him

a ball and letting him stand there perplexed. Or letting him throw it

akwardly. It would have helped his planning to teach him how to use a

full range of motions, IMO. But who knows how much that would help him

today? I don't know. There is probably a social component to this as

well to where these kids say "I don't care if I don't know how." lol.

Mental exhaustion

is a good thing to mention here too, as you did! Mentally, our kids

can be depressed and that can cause them to not want to move as much.

Anxiety can cause them to not want to move as well, especially if they

are not sure where their body parts are going to land if they try

something physical and new to them. I also think in autism, some kids

will shut down and "check out" to escape a lot of things. This can be

viewed as being lazy, uncooperative, defiant, etc. But if tuning in is

really hard work, then it could be a coping mechanism that they use

when things have built up.

For instance, I

was reading something the other day about autism and how we typically

can filter many things out in order to function during the day. They

used socks as an example. So we put socks on and we instantly

comprehend how they feel and filter that out to focus on other things.

Then people with autism are not always able to filter these things out

or do so imperfectly. So they put on that sock and it is there, on

their foot, hanging crooked on the little toe, slouching down the leg

or whatever it is that they are thinking. The point is, they are not

filtering this out in order to move on with their day. So if you

imagine going through the day like this, it would make tuning in hard

work!

I had something

else to write but I forgot! But these are just some ideas on the

topic.

Roxanna

Autism Happens

-----

Original Message -----

From:

rostevik

To:

Sent:

Tuesday, October 23, 2007 4:30 PM

Subject:

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in

my head. The

subject was leg pains, but what got me curious was what she wrote

about stamina. If I understood correctly, this can also be a generic

problem for kids with AS? Is that so? Why? And how do you handle it?

I've always thought of my son being extremely lazy and having a fear

for getting exhausted in any form, both physical and mentally. So I

thought this was an interesting perspective...

Rannveig/.

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Roxanna, I did read this fast, but I think you left out one thing. my son doesn't see anything below his waist. he will trip over a large object that's on the floor because he doesn't look down. I think I was told he's not aware of space. that is why he would walk right through a large puddle instead of around it. I know that sounds like a typical kid thing. but not with my son...He fell in the lake because he didn't watch where he was going while walking on the dock. that's why its hard for him to find something he needs, like his sneakers. he doesn't look around. Roxanna <madideas@...> wrote: I don't know why it's a problem. I have ideas of my own. It is a problem for a lot of kids with autism/AS. Some kids with hfa/AS have very lax joints. These kids will sit in a squating position (W position) for instance, have "double jointed" fingers and so forth. Ever see these kids walk? They have an odd gait. See them run? They will often hold their arms inward at their side when they run and not use their arms to pump themselves forward. A teacher once asked me if my older ds had CP because of the odd way he ran without moving his arms. He would hold his arms in a fist and carry them around his stomach area. Part of the problem could be lack of proper use compared to "typical" kids. I mean, while other kids are outside riding bikes, many kids with autism/AS are not! They have issues with proprioception - knowing where their body position is in relation to their surroundings. One of my ds's used to run into doorways a lot, not be able to know he has to move when walking in the store - not being able to plan how he will get through a busy aisle of people. Ever try to push your cart in the store but your child doesn't think about having to move in from the side once in a while to manuever through a crowded spot? Many can't ride bikes and similar activities because they have a hard time with motor

planning. One of my ds's had a hard time learning to walk up and down stairs. I have a friend whose son has autism and they say he is "ground bound" - meaning he has to have a foot on the ground at all times. He is not out there hoping and skipping and running up and down stairs. Another little guy I know has terrible fine and gross motor skills. He also does not play with toys at all - none. His calves are rock solid for all his toe walking and his hands have stamina for hand flapping purposes. But he doesn't ride his bike or use his muscles to move around the floor rolling cars, swing himself, jump up and down, play tag, etc. So these kids are not using these muscles - perhaps it causes the fatigue through lack of use? Or does the fatigue cause them not to do these things? I don't

know! But I do think the problem varies depending upon the severity in each person - like all symptoms of autism. What to do about it? I don't know. I would encourage a lot of physical activity to increase endurance but more importantly, to find physical activities they would enjoy and be good at long term. And that probably means helping the kids learn "how" to do things that we might assume they should know how to do automatically. With my older ds with hfa, he does not run. I remember a fun conversation with the high school PE teacher as she "informed" me one time that he "refused" to run. I mean, when asked, he will say, "I don't run." He means that. <G> OT can help with fine motor skills and improving muscles used there. I wish we had spent more time teaching him

how to do things - how to throw a ball, for instance, instead of just handing him a ball and letting him stand there perplexed. Or letting him throw it akwardly. It would have helped his planning to teach him how to use a full range of motions, IMO. But who knows how much that would help him today? I don't know. There is probably a social component to this as well to where these kids say "I don't care if I don't know how." lol. Mental exhaustion is a good thing to mention here too, as you did! Mentally, our kids can be depressed and that can cause them to not want to move as much. Anxiety can cause them to not want to move as well, especially if they are not sure where their body parts are going to land if they try something physical and new to them. I also think in autism, some kids will

shut down and "check out" to escape a lot of things. This can be viewed as being lazy, uncooperative, defiant, etc. But if tuning in is really hard work, then it could be a coping mechanism that they use when things have built up. For instance, I was reading something the other day about autism and how we typically can filter many things out in order to function during the day. They used socks as an example. So we put socks on and we instantly comprehend how they feel and filter that out to focus on other things. Then people with autism are not always able to filter these things out or do so imperfectly. So they put on that sock and it is there, on their foot, hanging crooked on the little toe, slouching down the leg or whatever it is that they are thinking. The point is, they are not filtering this

out in order to move on with their day. So if you imagine going through the day like this, it would make tuning in hard work! I had something else to write but I forgot! But these are just some ideas on the topic. RoxannaAutism Happens ( ) Stamina I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/. __________________________________________________

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Rose,Have you thought of getting him evaluated to see if he would benefit from vision therapy? Some school districts will pay for vision therapy. I know California does, but I think we are rare in that department. Just a thought, LizOn Oct 29, 2007, at 1:49 PM, Rose wrote:Roxanna,I did read this fast, but I think you left out one thing.  my son doesn't see anything below his waist.  he will trip over a large object that's on the floor because he doesn't look down.  I think I was told he's not aware of space.  that is why he would walk right through a large puddle instead of around it.  I know that sounds like a typical kid thing.  but not with my son...He fell in the lake because he didn't watch where he was going while walking on the dock.  that's why its hard for him to find something he needs, like his sneakers.  he doesn't look around.  

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Liz, I've heard that mentioned on this site once before. I'll look into that, thanks.Liz Bohn <lbohn@...> wrote: Rose, Have you thought of getting him evaluated to see if he would benefit from vision therapy? Some school districts will pay for vision therapy. I know California does, but I think we are rare in that department. Just a thought, Liz On Oct 29, 2007, at 1:49 PM, Rose wrote: Roxanna, I did read this fast, but I think you left out one thing. my son doesn't see anything below his waist. he will trip over a large object that's on the floor because he doesn't look down. I think I was told he's not aware of space. that is why he would walk right through a large

puddle instead of around it. I know that sounds like a typical kid thing. but not with my son...He fell in the lake because he didn't watch where he was going while walking on the dock. that's why its hard for him to find something he needs, like his sneakers. he doesn't look around. __________________________________________________

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Maybe you could contact an OT and have her/him work with your ds on strength training type exercises?

RoxannaAutism Happens

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

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Hi Rose, I did mention that problem - proprioception. I know that problem also as my two boys have it!

RoxannaAutism Happens

( ) Stamina

I've had a post from Roxanna back on Oct 17th spinning in my head. The subject was leg pains, but what got me curious was what she wrote about stamina. If I understood correctly, this can also be a generic problem for kids with AS? Is that so? Why? And how do you handle it?I've always thought of my son being extremely lazy and having a fear for getting exhausted in any form, both physical and mentally. So I thought this was an interesting perspective...Rannveig/.

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