Re: looks to good to have...

[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]

In a message dated 5/23/02 7:39:21 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< 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 know with my CFIDS, this is what happens. I can walk better than I can

stand still. You know, a great website for you to go to (and any others with

autonomic dysfunction) is www.ndrf.org. They have an on-line discussioni

board that will provide a wealth of info. And, your question above is the

type of thing the people on the National Dysautonomia Research Foundation

bulletin board talk about. :-)

Dena

[Guest guest]

In a message dated 5/23/02 7:39:21 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< 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 know with my CFIDS, this is what happens. I can walk better than I can

stand still. You know, a great website for you to go to (and any others with

autonomic dysfunction) is www.ndrf.org. They have an on-line discussioni

board that will provide a wealth of info. And, your question above is the

type of thing the people on the National Dysautonomia Research Foundation

bulletin board talk about. :-)

Dena

[Guest guest]

Hey Everyone, I just thought of this. There iss a great book called "Living with an Invisible Chronic Illness". It's a wonderful book to read. Get a copy at your local library, and request your children's teachers to read it. It's a quick , informative easy read! It doesn't mentiom Mito-diseases, it was written a while ago, but it really touches the same bases!

Robin

[Guest guest]

In a message dated 5/23/02 12:07:19 PM Pacific Daylight Time,

VisibleWorship@... writes:

<< so this is dysautonomia related? how do you get a dx of dysautonomia, by

the

way?

deb >>

Dysautonomia means autonomic dysfunction, which is very common in mito, some

metabolic diseases and with CFIDS. There is a genetic form of dysautonomia,

FD, which is primarily found in Ashkenazi Jews, is usually fatal. But, the

NDRF is primarily made up of CFIDS, POTS, and others with a wide variety of

autonomic dysfunction. got his dysautonomia diagnosis from a positive

tilt table test, along with the fact that he no longer sweats, doesn't have

normal thirst mechanism, has wide range of heart rate variability (40 to 200

on Holter) and blood pressure changes. I suspect his GI dysfunction is

almost partially part of his autonomic dysfunction.

Dena

[Guest guest]

We just went and bought a portable, fold up travel wheelchair out of our own

family budget ($150 on sale) and then made sure to tell the docs we were

using it for long distances, heat.

Dena

[Guest guest]

We just went and bought a portable, fold up travel wheelchair out of our own

family budget ($150 on sale) and then made sure to tell the docs we were

using it for long distances, heat.

Dena

[Guest guest]

In a message dated 5/24/02 9:50:14 PM Pacific Daylight Time,

momalboe@... writes:

<< Well, I didn't get to pay less taxes when I

didn't have a child in special education, so get over it! " I know, I'm a

brat

>>

But, a sweet, well informed brat! ;-)

Dena

[Guest guest]

In a message dated 5/24/02 9:50:14 PM Pacific Daylight Time,

momalboe@... writes:

<< Well, I didn't get to pay less taxes when I

didn't have a child in special education, so get over it! " I know, I'm a

brat

>>

But, a sweet, well informed brat! ;-)

Dena

[Guest guest]

Unfortunately, it's a pretty common feeling - most of them are " smart "

enough not to voice it so blatantly though Unfortunately, until the

federal government starts helping the states pay for what it has mandated,

this mentality is unlikely to change... And unfortunately, it's true. My

response to that though is that " Well, I didn't get to pay less taxes when I

didn't have a child in special education, so get over it! " I know, I'm a

brat

Terri

>From: waislandgirl@...

>Reply-To: Mito

>To: Mito

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

>Date: Fri, 24 May 2002 22:05:36 EDT

>

>When I was at my daughter's softball game last night, another parent, who

>is

>also on the site based council for the small school district, was lamenting

>how broke the school district was, " because of all the money they have to

>put

>out for aides for kids who are functioning at a 9 month level, with feeding

>tubes, etc. "

>

>I was shocked, that this seems to be message/attitude of the educators-that

>the special ed kids are taking away from programs for " others " in the

>community.

>

>Dena

>

>

>Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

We just went and bought a portable, fold up travel wheelchair out of our own

family budget ($150 on sale) and then made sure to tell the docs we were

using it for long distances, heat.

did this sound like suspicious behavior to them though?

deb

[Guest guest]

We just went and bought a portable, fold up travel wheelchair out of our own

family budget ($150 on sale) and then made sure to tell the docs we were

using it for long distances, heat.

did this sound like suspicious behavior to them though?

deb

[Guest guest]

In a message dated 5/25/02 5:56:48 PM Pacific Daylight Time,

VisibleWorship@... writes:

<< did this sound like suspicious behavior to them though? >>

They questioned about it and he answered appropriately. I think the

important part is that I told them up front that we were using it, and that

we were using it to EXPAND 's horizons, not to limit them. Previously,

we had to cut family outings short because got too tired.

Now that we have the ketone utilization disorder, it makes since, since

kiddos with organic acidemias tend to run out of energy, fatigue easily.

will go great guns, then start spilling ketones. His endurance has

increased with the diet, medication changes, but he still uses the wheelchair

sometimes and I imagine he will ask for it when it is hot. It is 's

choice as to when/if he feels that he needs it.

Dena

[Guest guest]

In a message dated 5/25/02 5:56:48 PM Pacific Daylight Time,

VisibleWorship@... writes:

<< did this sound like suspicious behavior to them though? >>

They questioned about it and he answered appropriately. I think the

important part is that I told them up front that we were using it, and that

we were using it to EXPAND 's horizons, not to limit them. Previously,

we had to cut family outings short because got too tired.

Now that we have the ketone utilization disorder, it makes since, since

kiddos with organic acidemias tend to run out of energy, fatigue easily.

will go great guns, then start spilling ketones. His endurance has

increased with the diet, medication changes, but he still uses the wheelchair

sometimes and I imagine he will ask for it when it is hot. It is 's

choice as to when/if he feels that he needs it.

Dena

[Guest guest]

Krystena:

Depending on how big Caden is you may want to consider a kidkart.

Leah is 4 years old and uses one. I believe depending on the growth

of the child; they can use it up to 6 or 7 years of age. It

comes apart and we have taken the foot rests off so to me it doesn't look

so "handicapped" chair for me, at least. Leah is supported and you

can put it in a reclining position. It does have straps to hold a

child in place. We needed that for Leah. Insurance paid for

it; even knowing that in two years Leah may get the hang of an electric

wheelchair and this chair will be used only at home use. I like the

kidkart because it brings Leah up higher than a stroller. We can

bring it in to restaurants and she sits right up by a table. At first

I was resisting the use of it; but Leah can't walk, so this was our only

choice for now. It is nice. But you may want to check in to

other options instead of carrying Caden everywhere. I know you will

get great upper strength in those muscles. Just a thought for you

to consider. You will want to save your back at all costs.

N. mom to Leah

Krystena s wrote:

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

s

mom 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]

Darlene,

Your son and my son might have well been twins. I have the very same horror stories. Ijust don't have enough energy today to fill you in. Please put me on your email list and feel free to contact me. It's inhumane the way are kids are treated. We have to get the word out about this disease. I really would love to fill you in on our stories, but I can't today.

I'll be thinking of you.

Robin

[Guest guest]

Darlene,

Your son and my son might have well been twins. I have the very same horror stories. Ijust don't have enough energy today to fill you in. Please put me on your email list and feel free to contact me. It's inhumane the way are kids are treated. We have to get the word out about this disease. I really would love to fill you in on our stories, but I can't today.

I'll be thinking of you.

Robin

[Guest guest]

Darlene,

I was impressed with your post about all you have done with the school

system for your son. You go!

-- Mom to:

Emilie (15), cerebral palsy, learning disabilities, suspected mito with

many autonomic symptoms

Kaitlin (15), cerebral palsy, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Darlene,

I was impressed with your post about all you have done with the school

system for your son. You go!

-- Mom to:

Emilie (15), cerebral palsy, learning disabilities, suspected mito with

many autonomic symptoms

Kaitlin (15), cerebral palsy, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Hi,

My son, J.D. is 14 years old, 5'8" and weighs about 200 lbs. To look at him anyone would think he is fit to do anything. I even had his doctor say just let him run around the building to build his strength up. When he did take PT, I would tell the therapist that later that evening he could not walk and we had to help him to bed. They go mmmmm and then I knew they did not understand.

When I read of the personal writing from parents, it is like an oxymoron, it saddens me to be able to relate but then it gives me comfort to know that someone is experiencing what we are.

Donna, I feel your pain reading about Lochie. I too, have to go deep to try and forgive people that was and is totally insensitive to J.D.

J.D. can walk into a store and get into a wheelchair and especially Wal-Mart will tell him to get out. When I tell them that he needs it, tell would say he looks healthy. Part of me wants to attack but I ask God to give me the words to say because I know my words could probably get me in trouble. J.D. usually wears a smile and if he is feeling well, he should not have to limp to the wheelchair.

He has a push wheelchair for school. The MDA doctor is waiting to see if the coenzyme Q10 will help. It is taking a month to get the insurance to approve since the prescription is written in a prescription dosage. Also, some mitochondria disorders come under Muscular Dystrophy. Although, we are in the process of getting J.D. on tefra, J.D. has Muscular Dystrophy insurance. The will pay up to $2,000 on a power chair what the insurance does not cover. He also qualifies to go to the MDA camp. Last year was his first year.

Actually, the camp was a blessing. Because the hospital would put "the mom said" and viewed me as looney. He went to camp with the diagnosis of an unknown neuro-muscular disease. The camp counselors witnessed everything I had told the doctors. I kept saying I could understand if he only lost energy with things he did not want to do but he is losing energy with things he likes to do. Thankfully, the MDA doctor wrote the referral to Dr. Shoffner in Atlanta and J.D. had the muscular biopsy during he Christmas break. Dr. Shoffner apologized for the other doctors and said that the doctors in ton, SC was just treating J.D. based on opinion.

J.D. is in the 9th grade going to the 10th grade. When J.D. first started getting weaker, I had teachers tell me that he is just "faking" he illness. I hired an attorney and filed a formal complaint with the Office of Civil Rights against the school district. We put in a private school for 2 years and when it became apparent that he needed more help, we enrolled him back in public school for his 7th grade. He did not go school for 2 months because they did not know what to do with him. The principal took J.D. basically under he wing because the district did not have a clue. He went 2-1/2 hours with homebound services. During 8th grade, he went to school with three 45-minute rest periods. He was the first person in our district to get homebound even tough he was at school all day. In 9th grade, he goes to school for 3 periods and has homebound. I stay on top of things or at least try to. At first the aid had J.D. push his own wheelchair, the aid was let go after the assistant principal told her numerous times not to do this.

The problem we have with schools is I sure like all the parents with kids with mito that looks healthy, he that they do not understand. We can educate them, but for some reason they have to see it first hand. We the help of the attorney, because an IEP is a legal-binding document, we took out words like "as needed," "opinion" and "sometimes." We try to have one person accountable because they want to play the blame game, the teacher blames the principal, the principal blames the district, the district blames the state, etc.

I have been going to the parent advisory meetings for special education and last month, our state was cited for not enough supervision from the state to the district level. The sad part is that the federal government cited the state but it also holds true for the federal government not supervising the state as closely. President Bush signed into executive order "No Child Left Behind" and every state is going to have to be accountable for these students. If your child is on a 504, it is recommended that they be placed on an IEP. Although a 504 can be legal binding, the district has to give more funding for the IEP.

At the beginning of the school year we put in the paper for any parent having problems with special education to meet. The number of parents were overwhelming. We went to the school board meeting and are presently meeting to make the school district better for special education. Mito is a complicated disorder but when the district has a student with another disorder like autism that is more defined, they are still not doing what they are suppose to. Our two main goals is that what is written on an IEP be followed and that teachers be trained.

For next year, I had it put in my son's IEP that I will go into the classroom and talk briefly with pamphlets from the Mito foundation to help educate. He will also, not go into a class if there is a substitute teacher. I have been a substitute teacher for 9 years and the problem isn't always the substitute it is that the school is not letting the substitute aware of special education students that are mainstreamed. I do not want my son disrespectful but I do not want him to be out two days because a substitute was not made aware of his disease.

Thanks for letting me vent. Didn't mean to write a chapter.

Darlene Graham

ddgraham@...

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]

I just finished reading Darlene's letter. I have been searching my

heart for a reason that Isabelle has MITO. I have had thoughts about

many reasons for this. When I was little I used to make up stories

about sick kids and wish that I could break a leg or something. I

was an only child and had a lot of free time on my hands. I thought

that maybe since I felt that way then maybe God was punishing me. I

thought that maybe she really wasn't sick and I was making it all up

(this stemmed from all the times I was told I was just an over-

paranoid mother, " new mother syndrome " ) But thanks to Darlene I

think I finally figured it out. I think that God wanted me to see

how judgemental I was. Every time I would see a toddler with a

pacifier in his/her mouth I would shudder because I thought I was

smart and I KNEW that there was no reason for it. But now I know,

thanks to other parents, that sometimes a pacifier can be the only

oral stimulation a child gets. If I saw a kid using a wheelchair in

a store I KNEW that he/she was just goofing aroung and he/she should

leave the chair for those who needed it. But I now know, from

personal experience that isn't true. Thanks to Isabelle and MITO I

have become a better advicate for kids with special needs. I have

learned to fight for my rights as a parent, care-giver, and person.

I have learned that everything you see isn't always as clear as black

and white. Thanks to Isabelle and MITO I think that I am a better

person. So, thank-you to all the parents who helped me realize how

great Isa is. I may not always like the bad parts of her having MITO

but I am learning that there are good parts too and sometimes I just

need to take a minute and appriciate them!

Sharon mom to Isabelle and Rebekah