Re: looks to good to have...

[Guest guest]

Ken,

I agree with you wholeheartedly. There is no such thing as looking too

healthy to have mito. Evan looks fine when he wakes up from a nap, and

oddly enough he still tends to fall asleep on longer car rides esp. in

the afternoon. So anytime that he goes to a doctor whose office is more

than 20 minutes away, he arrives rested from the short catnap on the

way. Most of his doctors are in Dallas or Fort Worth which are about a

50 minute drive from our house! Even his pediatrician was not aware of

extent of his fatigue until I scheduled an after- school appointment

with her to evaluate his ptosis.

I visited your new website and I can really relate to Rhys' problem with

too much physical exertion at school.

What a great quote from Dr. Dad--

" School was also becoming more and more interesting. He was getting

exceedingly tired in 3rd grade after having gym. Mind you, his IEP

stated that he was only to have 15 minutes of gym and no recess.

Apparently, his gym teacher forgot that. For many months after having

had gym, he would come home, not do his homework and sleep till the

following morning. This was especially true at the end of third grade.

We had emphasized this for this school year - 4th grade - and still, he

came home exhausted. So, I had written a note that he was to have 15

minutes of gym, no matter what! "

Evan is a 4th grader and recently the State of Texas has mandated 15

minutes of exercise per day in elementary school. On a cool day, I

would say that it is reasonable to assume that Evan can handle this, BUT

last Thursday his class did their 20 minutes of exercise just after

morning announcements, had PE for 30 minutes at 10 AM, and then had 30

minutes of outdoor recess in the heat of the day at 1:00 PM. When I

picked Evan up at 2:00 PM, he looked like he had just run a marathon.

For the rest of the day and the following day he was more clumsy than

usual and very fatigued. That evening, it was all that he could do to

sit up to eat dinner.

[Guest guest]

Allisen

Colby also fatigues at school and by the end of the week his teacher puts him

in time out quite often, and I repeat to her that he is exhausted. He cries

and whines when he gets home from school, also very week. Unlike your kids,

Colby does have dysmorphic features, and his growth is severely stunted. But

the kids love him and fight to play with him at recess, which his teacher

takes away from him for punishment. I gave her an article about kids with

mito and fatigue, but she never figured it out. They made him run 20 laps in

PE, mostly he walked. I told PE teacher I thought that is too much, since

lactic acid rises with exercise. She told me he lets her know when he is

tired. He does not speak, so I think it is not right to exhaust him to the

point that he can't go on. Good luck with the fight, teachers often forget

there IS an IEP they have to follow.

See ya

[Guest guest]

In a message dated 5/22/02 10:06:36 AM Pacific Daylight Time,

cccccclark@... writes:

<< I told PE teacher I thought that is too much, since

lactic acid rises with exercise. She told me he lets her know when he is

tired. He does not speak, so I think it is not right to exhaust him to the

point that he can't go on. >>

is so tenacious that he won't say he's tired, but he will start

falling in PE, etc. While I am working with him on pacing himself, I've also

asked and asked again for the PE, other teachers to watch for . The

peds doc also wrote a letter last year asking for them to allow to

lessen his level of participation. But, it's hard for so many people to

understand. For example, is playing Little League (not a lot of

running in an instructional league....mostly standing on the field or sitting

in the dugout), but he used the wheelchair when we went into Seattle for a

Mariners game last night..because he was just too tired to walk long

distances after school all day. People don't understand that. I read

somewhere that it's kind of like a truck that has 2 gas tanks....our kids

can't switch over to the back-up tank and run out of gas. Kind of

simplistic, but it explains it well.

Dena

[Guest guest]

Anne

Colby is in adaptive P E with the regular ed kids. His adaptive PE teacher

is the one that works with him and yes there very specific instructions in

his IEP regarding P E. WE see our neuro. next week and I am going to ask him

what he thinks. Thanks for the input.

mom to Colby 12, COX IV, LCHAD

[Guest guest]

In a message dated 5/22/02 1:43:42 PM Pacific Daylight Time,

tyandsharon@... writes:

<< I kept thinking what if they saw her in the

dance recital next Friday and then saw me pushing her in a wheel

chair???? I know it is probably a silly thing but that is how I

feel. >>

I would recommend education, education, education and then even more

awareness forthe people in your community. This situation is EXACTLY what

started our CPS problems a year ago. People actually told me-how is

able to play soccer (even though he's only the goalie and has had to visit

the ER for IV fluids twice after games!), but then he is sometimes in a

wheelchair (during long outings to the city or once in our small town during

80 plus degree weather for a festival)?

Please continue to advocate for your daughter, but in retrospect, I believe

that education/awareness are the best ways to nip problems in the bud.

Dena

[Guest guest]

In a message dated 5/22/02 1:43:42 PM Pacific Daylight Time,

tyandsharon@... writes:

<< I kept thinking what if they saw her in the

dance recital next Friday and then saw me pushing her in a wheel

chair???? I know it is probably a silly thing but that is how I

feel. >>

I would recommend education, education, education and then even more

awareness forthe people in your community. This situation is EXACTLY what

started our CPS problems a year ago. People actually told me-how is

able to play soccer (even though he's only the goalie and has had to visit

the ER for IV fluids twice after games!), but then he is sometimes in a

wheelchair (during long outings to the city or once in our small town during

80 plus degree weather for a festival)?

Please continue to advocate for your daughter, but in retrospect, I believe

that education/awareness are the best ways to nip problems in the bud.

Dena

[Guest guest]

In a message dated 5/22/02 1:43:42 PM Pacific Daylight Time,

tyandsharon@... writes:

<< I kept thinking what if they saw her in the

dance recital next Friday and then saw me pushing her in a wheel

chair???? I know it is probably a silly thing but that is how I

feel. >>

I would recommend education, education, education and then even more

awareness forthe people in your community. This situation is EXACTLY what

started our CPS problems a year ago. People actually told me-how is

able to play soccer (even though he's only the goalie and has had to visit

the ER for IV fluids twice after games!), but then he is sometimes in a

wheelchair (during long outings to the city or once in our small town during

80 plus degree weather for a festival)?

Please continue to advocate for your daughter, but in retrospect, I believe

that education/awareness are the best ways to nip problems in the bud.

Dena

[Guest guest]

Hi ,

Thank you for your compliment. What you are experiencing with PE and time out, we had the same experience. J.D. would say he went to time out to rest. We hire an attorney and filed a formal complaint with the Office of Civil Rights for the school discriminating against a disability.

Schools do not understand that J.D. can look good and produce work in a short-term span; however, the long-term affects him physically.

You can call the Protection and Advocacy Office (some are okay) if you do not have the money for an attorney to make sure words "as needed" are specified and terms like sit close to teacher needs to read sit close to teacher "daily." You can request a complaint form from the Office of Civil Rights and file yourself.

Good Luck

Darlene

Re: Re: "looks to good to have..."

AllisenColby also fatigues at school and by the end of the week his teacher puts him in time out quite often, and I repeat to her that he is exhausted. He cries and whines when he gets home from school, also very week. Unlike your kids, Colby does have dysmorphic features, and his growth is severely stunted. But the kids love him and fight to play with him at recess, which his teacher takes away from him for punishment. I gave her an article about kids with mito and fatigue, but she never figured it out. They made him run 20 laps in PE, mostly he walked. I told PE teacher I thought that is too much, since lactic acid rises with exercise. She told me he lets her know when he is tired. He does not speak, so I think it is not right to exhaust him to the point that he can't go on. Good luck with the fight, teachers often forget there IS an IEP they have to follow.See ya Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ,

Thank you for your compliment. What you are experiencing with PE and time out, we had the same experience. J.D. would say he went to time out to rest. We hire an attorney and filed a formal complaint with the Office of Civil Rights for the school discriminating against a disability.

Schools do not understand that J.D. can look good and produce work in a short-term span; however, the long-term affects him physically.

You can call the Protection and Advocacy Office (some are okay) if you do not have the money for an attorney to make sure words "as needed" are specified and terms like sit close to teacher needs to read sit close to teacher "daily." You can request a complaint form from the Office of Civil Rights and file yourself.

Good Luck

Darlene

Re: Re: "looks to good to have..."

AllisenColby also fatigues at school and by the end of the week his teacher puts him in time out quite often, and I repeat to her that he is exhausted. He cries and whines when he gets home from school, also very week. Unlike your kids, Colby does have dysmorphic features, and his growth is severely stunted. But the kids love him and fight to play with him at recess, which his teacher takes away from him for punishment. I gave her an article about kids with mito and fatigue, but she never figured it out. They made him run 20 laps in PE, mostly he walked. I told PE teacher I thought that is too much, since lactic acid rises with exercise. She told me he lets her know when he is tired. He does not speak, so I think it is not right to exhaust him to the point that he can't go on. Good luck with the fight, teachers often forget there IS an IEP they have to follow.See ya Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ,

Thank you for your compliment. What you are experiencing with PE and time out, we had the same experience. J.D. would say he went to time out to rest. We hire an attorney and filed a formal complaint with the Office of Civil Rights for the school discriminating against a disability.

Schools do not understand that J.D. can look good and produce work in a short-term span; however, the long-term affects him physically.

You can call the Protection and Advocacy Office (some are okay) if you do not have the money for an attorney to make sure words "as needed" are specified and terms like sit close to teacher needs to read sit close to teacher "daily." You can request a complaint form from the Office of Civil Rights and file yourself.

Good Luck

Darlene

Re: Re: "looks to good to have..."

AllisenColby also fatigues at school and by the end of the week his teacher puts him in time out quite often, and I repeat to her that he is exhausted. He cries and whines when he gets home from school, also very week. Unlike your kids, Colby does have dysmorphic features, and his growth is severely stunted. But the kids love him and fight to play with him at recess, which his teacher takes away from him for punishment. I gave her an article about kids with mito and fatigue, but she never figured it out. They made him run 20 laps in PE, mostly he walked. I told PE teacher I thought that is too much, since lactic acid rises with exercise. She told me he lets her know when he is tired. He does not speak, so I think it is not right to exhaust him to the point that he can't go on. Good luck with the fight, teachers often forget there IS an IEP they have to follow.See ya Please contact mito-owner with any problems or questions.

[Guest guest]

Dena and others,

Thank you for sharing about this topic. I struggle with it all the

time. Isa is too little to understand yet so I know that it is all

me. I am also glad to hear that your son plays ball. Isa takes a

dance class 45 minutes a week which is her passion. She takes a 2-3

hour nap before and a 1-3 hour nap afterward to recover. But, she

loves it so much we hate to take her out. Anyway, we went shopping

for her wheelchair yesterday and I was worried about other people in

town seeing her in it. I kept thinking what if they saw her in the

dance recital next Friday and then saw me pushing her in a wheel

chair???? I know it is probably a silly thing but that is how I

feel.

As for the school thing we had Isa in Title One Pre-school which is

for children with special needs. On a perticularly cold day I

reminded her teacher, once again, that Isa was not to go outside

because she can't handle the cold. The teacher told me that if she

can't handle the cold then I just need to dress her warmer because

the class goes outside every day. We took her out of school and are

now planning on homeschooling. I know that legally we could fight

but I am already tired and she is only 3. I think our problem is

that in the eyes of an untrained person our kids look great! But,

when we know what we are looking for we see 10 times more then the

teacher. Isa used to ask to sit out but now she keeps pushing

herself until she is so worn out that she CAN'T continue.

Good luck to all,

Sharon mom to ISabelle(3, unspecified, ETC?) and Rebekah(1, ?)

[Guest guest]

and Dena:

do they not offer specially designed phy Ed (SDPE) to your kids? even if you

want your kids to stay in the same Phy Ed class you might request having

them placed in SDPE. The SDPE teacher could go into the regular phy Ed

class with your children or even just be a consult that modifies the

curriculum for your kiddos. That way you are not in the position of asking

(and trusting and even enforcing ) the phy Ed teacher to modify for fatigue

reasons.

Anne

[Guest guest]

About looking too good, It is a shame that our kids have to wear their disease! This topic really strikes a nerve.

I have had someone in our family to tell me to give Caden VITAMINS! "That's all he needs", she said!

Caden can't even go swimming on a hot day. He freezes so bad and can't keep up his sugar levels but he is a beautiful little boy who does "look" just fine.

Sure he has low muscle tone but unless you are looking for it, you wouldn't know it or would just think he needs to eat!

Especially those who don't uderstand what low muscle tone is. He is able to walk and talk fleuntly. Like you guys said, it is later that he pays for the walking and running.

I am really puzzled about what to do about school. I do not think I am up to home schooling but then again, I think if I have to FORCE those at school to take care of him, they may take it out on Caden.

No one criticizes diabetics or people with heart disease for not "looking the part"!

I think people are quick to judge when they are un informed.

Shraron,

When are you using Isa's wheel chair? Is this paid for by the Waiver program? Is it power?

I guess we will stick with carrying Caden until we can't. I can only imagine what my dear sweet sister in law would say if she saw Caden in a wheel chair. She is the one who said that he needed vitamins and I acted like Caden was 'HALF DEAD'! I told her a head full!

Don't get me wrong, I would put him in one if it comes to that. We are using a stroller for now.

As he gets bigger I am sure a stroller won't be an option. Especially in school.

Well, I had better leave well enough alone. I get my blood pressure up when I start thinking about all of the criticiszms we have gotten for Caden looking so good. My husband and I was just talking about this, this past weekend.

We should thank God that our children have good days and can tolerate an hour or so of dance, running, or swimming.

Just wanted to vent some,

Krystena smom to Caden 3-possible GAII and/or Mito.Warren 7 untested 9 untested

Re: "looks to good to have..."

Dena and others,Thank you for sharing about this topic. I struggle with it all the time. Isa is too little to understand yet so I know that it is all me. I am also glad to hear that your son plays ball. Isa takes a dance class 45 minutes a week which is her passion. She takes a 2-3 hour nap before and a 1-3 hour nap afterward to recover. But, she loves it so much we hate to take her out. Anyway, we went shopping for her wheelchair yesterday and I was worried about other people in town seeing her in it. I kept thinking what if they saw her in the dance recital next Friday and then saw me pushing her in a wheel chair???? I know it is probably a silly thing but that is how I feel. As for the school thing we had Isa in Title One Pre-school which is for children with special needs. On a perticularly cold day I reminded her teacher, once again, that Isa was not to go outside because she can't handle the cold. The teacher told me that if she can't handle the cold then I just need to dress her warmer because the class goes outside every day. We took her out of school and are now planning on homeschooling. I know that legally we could fight but I am already tired and she is only 3. I think our problem is that in the eyes of an untrained person our kids look great! But, when we know what we are looking for we see 10 times more then the teacher. Isa used to ask to sit out but now she keeps pushing herself until she is so worn out that she CAN'T continue.Good luck to all,Sharon mom to ISabelle(3, unspecified, ETC?) and Rebekah(1, ?)Please contact mito-owner with any problems or questions.

[Guest guest]

In a message dated 5/22/02 9:44:18 PM Pacific Daylight Time,

krystena@... writes:

<< When are you using Isa's wheel chair? Is this paid for by the Waiver

program? Is it power? >>

I'm not Sharon (smile) but we bought a travel wheelchair at the drugstore for

about $150. It folds up easily in the van and is great for helping

" catch a ride " for the long family outings.

You made good comments about everyone not giving a diabetic, etc. grief like

they do to us/our children. I actually made a similar comment to the school

secretary who made the comment about . I said that if it was a cystic

fibrosis patient or something similar, they would be giving the parents kudos

for encouraging their child to participate to their full ability. Why is it

any different for our children??? Their response- to call CPS and try to

postpone closure of the case (they weren't successful-praise the Lord!!),

because, since I wouldn't sign a release for them to talk to the

genetics/metabolic doc privately (without me present), that they didn't

believe the diagnosis! I had offered to take any questions, letter to the

doc and then bring answers/letter written in return, but that wasn't good

enough. So, rather than accept the diagnosis (and copy of email from the doc

stating the same), they just choose to say that I am lying and that

and don't have a metabolic/mito disorder.......sigh......

Dena

[Guest guest]

In a message dated 5/22/02 11:59:57 AM Pacific Daylight Time,

juhlmann@... writes:

<< do they not offer specially designed phy Ed (SDPE) to your kids? even if

you

want your kids to stay in the same Phy Ed class you might request having

them placed in SDPE. The SDPE teacher could go into the regular phy Ed

class with your children or even just be a consult that modifies the

curriculum for your kiddos. That way you are not in the position of asking

(and trusting and even enforcing ) the phy Ed teacher to modify for fatigue

reasons. >>

Sorry to sound like a broken record, but since the school counselor was the

one who called CPS and said that I was either causing to be sick or

was overreacting/overtreating, the school (in CYA mode) has denied that any

accomodations need to be made for any of my children. We just got an Office

of Civil Rights signed " Agreement to Resolve " just to get my daughter large

print books that were agreed to in a 504 1.5 years ago!!!

Interesting that they said had " no academic concerns " at an SST when

the CPS case was still open, yet 1 wk after the CPS case was closed as

unfounded, they put into Title 1 (federally funded) reading

assistance/immersion.

So, PE isn't even a question right now...for accomodation. He does have a

letter which states that he can self limit, but is like many other

kiddos on this list-he doesn't know the word " pace " yet, and goes until he

drops-then he's sick for a while and spilling lots of ketones.

Dena

[Guest guest]

In a message dated 5/22/02 11:59:57 AM Pacific Daylight Time,

juhlmann@... writes:

<< do they not offer specially designed phy Ed (SDPE) to your kids? even if

you

want your kids to stay in the same Phy Ed class you might request having

them placed in SDPE. The SDPE teacher could go into the regular phy Ed

class with your children or even just be a consult that modifies the

curriculum for your kiddos. That way you are not in the position of asking

(and trusting and even enforcing ) the phy Ed teacher to modify for fatigue

reasons. >>

Sorry to sound like a broken record, but since the school counselor was the

one who called CPS and said that I was either causing to be sick or

was overreacting/overtreating, the school (in CYA mode) has denied that any

accomodations need to be made for any of my children. We just got an Office

of Civil Rights signed " Agreement to Resolve " just to get my daughter large

print books that were agreed to in a 504 1.5 years ago!!!

Interesting that they said had " no academic concerns " at an SST when

the CPS case was still open, yet 1 wk after the CPS case was closed as

unfounded, they put into Title 1 (federally funded) reading

assistance/immersion.

So, PE isn't even a question right now...for accomodation. He does have a

letter which states that he can self limit, but is like many other

kiddos on this list-he doesn't know the word " pace " yet, and goes until he

drops-then he's sick for a while and spilling lots of ketones.

Dena

[Guest guest]

In a message dated 5/22/02 11:59:57 AM Pacific Daylight Time,

juhlmann@... writes:

<< do they not offer specially designed phy Ed (SDPE) to your kids? even if

you

want your kids to stay in the same Phy Ed class you might request having

them placed in SDPE. The SDPE teacher could go into the regular phy Ed

class with your children or even just be a consult that modifies the

curriculum for your kiddos. That way you are not in the position of asking

(and trusting and even enforcing ) the phy Ed teacher to modify for fatigue

reasons. >>

Sorry to sound like a broken record, but since the school counselor was the

one who called CPS and said that I was either causing to be sick or

was overreacting/overtreating, the school (in CYA mode) has denied that any

accomodations need to be made for any of my children. We just got an Office

of Civil Rights signed " Agreement to Resolve " just to get my daughter large

print books that were agreed to in a 504 1.5 years ago!!!

Interesting that they said had " no academic concerns " at an SST when

the CPS case was still open, yet 1 wk after the CPS case was closed as

unfounded, they put into Title 1 (federally funded) reading

assistance/immersion.

So, PE isn't even a question right now...for accomodation. He does have a

letter which states that he can self limit, but is like many other

kiddos on this list-he doesn't know the word " pace " yet, and goes until he

drops-then he's sick for a while and spilling lots of ketones.

Dena

[Guest guest]

> Sharon,

> When are you using Isa's wheel chair? Is this paid for by the

Waiver program? Is it power?>

We haven't gotten the chair yet. We are still waiting on the

insurance approval. The company we are looking at getting it through

says that our insurance will proably pay part and then the waiver

will pick up the rest.

We plan on using it any time that we go where she will be walking a

great deal. We currently use a stroller but she is really getting

too big for it. When in the store we have her ride in the cart but

she says that hurts her legs. I suppose if I wasn't lugging around

her little sister I could proably just keep carring her. But, so

many people on this list have given me hope that it is Okay to admit

that our children, as well as ourselves and our backs, could benefit

from the use of a wheel chair.

Sharon

[Guest guest]

> Sharon,

> When are you using Isa's wheel chair? Is this paid for by the

Waiver program? Is it power?>

We haven't gotten the chair yet. We are still waiting on the

insurance approval. The company we are looking at getting it through

says that our insurance will proably pay part and then the waiver

will pick up the rest.

We plan on using it any time that we go where she will be walking a

great deal. We currently use a stroller but she is really getting

too big for it. When in the store we have her ride in the cart but

she says that hurts her legs. I suppose if I wasn't lugging around

her little sister I could proably just keep carring her. But, so

many people on this list have given me hope that it is Okay to admit

that our children, as well as ourselves and our backs, could benefit

from the use of a wheel chair.

Sharon

[Guest guest]

> Sharon,

> When are you using Isa's wheel chair? Is this paid for by the

Waiver program? Is it power?>

We haven't gotten the chair yet. We are still waiting on the

insurance approval. The company we are looking at getting it through

says that our insurance will proably pay part and then the waiver

will pick up the rest.

We plan on using it any time that we go where she will be walking a

great deal. We currently use a stroller but she is really getting

too big for it. When in the store we have her ride in the cart but

she says that hurts her legs. I suppose if I wasn't lugging around

her little sister I could proably just keep carring her. But, so

many people on this list have given me hope that it is Okay to admit

that our children, as well as ourselves and our backs, could benefit

from the use of a wheel chair.

Sharon

[Guest guest]

I would recommend education, education, education and then even more

awareness forthe people in your community. This situation is EXACTLY what

started our CPS problems a year ago. People actually told me-how is

able to play soccer (even though he's only the goalie and has had to visit

the ER for IV fluids twice after games!), but then he is sometimes in a

wheelchair (during long outings to the city or once in our small town during

80 plus degree weather for a festival)?

Dena

I think I am afraid of this as well... is hyper so he is jumping around and he loves to play ball and outside...he is really good at it...even though his gait and cooridination are declining, his hand-eye is still really good and he is still able to hit 12 ft basketballs (has been since he was three)...but I know what you mean. My other comment/question is...does anyone know why long-distant walking/standing seems to bother them so much, but more active and jumpy activity is easier on them? I have been wondering this a while...

deb

[Guest guest]

I would recommend education, education, education and then even more

awareness forthe people in your community. This situation is EXACTLY what

started our CPS problems a year ago. People actually told me-how is

able to play soccer (even though he's only the goalie and has had to visit

the ER for IV fluids twice after games!), but then he is sometimes in a

wheelchair (during long outings to the city or once in our small town during

80 plus degree weather for a festival)?

Dena

I think I am afraid of this as well... is hyper so he is jumping around and he loves to play ball and outside...he is really good at it...even though his gait and cooridination are declining, his hand-eye is still really good and he is still able to hit 12 ft basketballs (has been since he was three)...but I know what you mean. My other comment/question is...does anyone know why long-distant walking/standing seems to bother them so much, but more active and jumpy activity is easier on them? I have been wondering this a while...

deb

[Guest guest]

.. I said that if it was a cystic

fibrosis patient or something similar, they would be giving the parents kudos

well looks can be decieving...we happen to live in Memphis where St Jude's Research Hospital is...the leading childhood cancer hospital...anyway, we see kids all around town that are St Jude patients...the are active...shopping, playing, eating...the only reason I know they are patients is thier little bald heads...Sometimes I think that kids are this way--active even tho they are sick--bc they dont' know any better...we adults get a little headache or sprain our wrist and use it for every excuse we can...I was dx with fibromyalgia when I was 18...I met some other ladies with it and i found that they had just given up and gone to bed for the rest of thier life...while I find that their is validity to symptoms and my young age was probably to my benefit, I found that ways to prevent pain...like I don't do the mopping...I dont carry heavy things...I don't do things that are repetitive using my muscles...they put me on 11 pills a day and I felt awful...I decided to change my thinking and my routine and I feel fine...every now and then I feel bad...I was given handicapped parking at th e beginning and one lady said to her little girl "Handicapped parking is for the physically handicapped, not the mentally"...I went in and told her she ought to be embarrassed to be such a poor example to her daughter...and at the time, I had torn all the ligaments in my ankle and was wearing a brace too...nayway, I digress...the point is...kids are at an advantage b/c of thier lack on understanding...they just do what they want to do...but we as adults have learned to respond differently which is really why we have preconceived notions of how things are supposed to look!

deb

[Guest guest]

It is so sad to read all of these school nightmare stories-----we had problems when emmy was in her integrated pre-school of all places! (i should have sensed trouble at the first meeting when i heard the healthy children referred to as "role models")

for the last two years ,though ,we have been blessed. em is in a mainstream kindergarten in a public school---as of next year it will be her 3rd year in kindergarten. but this is good and to my liking as emmy is developmentally at a 3 year old level. she has a terrific aide who stays with her for the 2-3 hours she is at school. she only attends 3 days a week and even then sometimes that is too much so we take a break.

yes, we have hit many brick walls and i will probably home school emmy within the next few years. but i have found that if you can reach a few kind people in the system, educate them , allow them to realize how special your child is and truly see her as a human being , then maybe you have just alittle bit more of a chance in getting all that is deserved for your child.

my heart is breaking when i read these horror stories and i wonder how people like this can even work with young children-----god bless our kids and god bless all of you fighting so hard.

mary

waislandgirl@... wrote: << do they not offer specially designed phy Ed (SDPE) to your kids? even if youwant your kids to stay in the same Phy Ed class you might request havingthem placed in SDPE. The SDPE teacher could go into the regular phy Edclass with your children or even just be a consult that modifies thecurriculum for your kiddos. That way you are not in the position of asking(and trusting and even enforcing ) the phy Ed teacher to modify for fatiguereasons. >>Sorry to sound like a broken record, but since the school counselor was the one who called CPS and said that I was either causing to be sick or was overreacting/overtreating, the school (in CYA mode) has denied that any accomodations need to be made for any of my children. We just got an Office of Civil Rights signed "Agreement to Resolve" just to get my daughter large print books that were agreed to in a 504 1.5 years ago!!! Interesting that they said had "no academic concerns" at an SST when the CPS case was still open, yet 1 wk after the CPS case was closed as unfounded, they put into Title 1 (federally funded) reading assistance/immersion.So, PE isn't even a question right now...for accomodation. He does have a letter which states that he can self limit, but is like many other kiddos on this list-he doesn't know the word "pace" yet, and goes until he drops-then he's sick for a while and spilling lots of ketones.Dena

[Guest guest]

It is so sad to read all of these school nightmare stories-----we had problems when emmy was in her integrated pre-school of all places! (i should have sensed trouble at the first meeting when i heard the healthy children referred to as "role models")

for the last two years ,though ,we have been blessed. em is in a mainstream kindergarten in a public school---as of next year it will be her 3rd year in kindergarten. but this is good and to my liking as emmy is developmentally at a 3 year old level. she has a terrific aide who stays with her for the 2-3 hours she is at school. she only attends 3 days a week and even then sometimes that is too much so we take a break.

yes, we have hit many brick walls and i will probably home school emmy within the next few years. but i have found that if you can reach a few kind people in the system, educate them , allow them to realize how special your child is and truly see her as a human being , then maybe you have just alittle bit more of a chance in getting all that is deserved for your child.

my heart is breaking when i read these horror stories and i wonder how people like this can even work with young children-----god bless our kids and god bless all of you fighting so hard.

mary

waislandgirl@... wrote: << do they not offer specially designed phy Ed (SDPE) to your kids? even if youwant your kids to stay in the same Phy Ed class you might request havingthem placed in SDPE. The SDPE teacher could go into the regular phy Edclass with your children or even just be a consult that modifies thecurriculum for your kiddos. That way you are not in the position of asking(and trusting and even enforcing ) the phy Ed teacher to modify for fatiguereasons. >>Sorry to sound like a broken record, but since the school counselor was the one who called CPS and said that I was either causing to be sick or was overreacting/overtreating, the school (in CYA mode) has denied that any accomodations need to be made for any of my children. We just got an Office of Civil Rights signed "Agreement to Resolve" just to get my daughter large print books that were agreed to in a 504 1.5 years ago!!! Interesting that they said had "no academic concerns" at an SST when the CPS case was still open, yet 1 wk after the CPS case was closed as unfounded, they put into Title 1 (federally funded) reading assistance/immersion.So, PE isn't even a question right now...for accomodation. He does have a letter which states that he can self limit, but is like many other kiddos on this list-he doesn't know the word "pace" yet, and goes until he drops-then he's sick for a while and spilling lots of ketones.Dena