newby

[Guest guest]

In a message dated 5/17/02 5:26:28 PM Central Daylight Time,

annemills@... writes:

> The diagnosis was finally made

> when my big toe nail spent 6 months turning blue, getting thick and peeling

> off.

The part about the nail turning blue doesnt sound like psoriasis to me the

rest does though. What does everyone else think about that? A more accurate

progression based on my experience would be any one or a combination of;

turning yellow or brown (oil spot), dots or streaks of blood from tiny

hemorages beneath the nail, the nail seperating from the flesh underneath

(oncholysys), seperation of the nail from the cuticle.

<Had some rash but it didn't really look like psoriasis.> Can you describe

what the rash did look like and how long did the rash last? Orin

[Guest guest]

Hi Mills,

I'm Jeani Mills, the other newby.

We are in the same age bracket also.

Lots in common.

That's what is so neet about this board.

Common problems to share even if the doctor doesn't recognize

them.

Been fighting the TMJ for centuries!

About the toenail turning blue, was it the nail or the toe around

the nail?

That's what happend to me.

It got infected several times and I wore my Berkenstocks only for

over a year.

Finally the nail, what was left of it, was surgically removed.

Now it's my left thumb and pinky that are blue, or is it purple?

Not sure, sometimes black, always swollen and have to

constantly watch to make sure they don't get infected.

Take care,

Jeani Mills-

-- In @y..., " Anne Mills " <annemills@p...> wrote:

> I have just received the diagnosis of psoriatic arthritis and it

has just

> taken about 35 years to come to that conclusion. I have had

joint symptoms

> off and on since the seventh grade and I am 59 years old. In

my 20's I had

> joint symptoms and was treated with NSID'S with little relief (in

> retrospect). Had some trouble in my 30's and 40's but could be

managed with

> advil and exercise. Had lots of trouble with TMJ during that

time with

> braces and jaw surgery finally helping. About 6 years ago

started having

> more pain in knees with lots of swelling. Had some rash but it

didn't

> really look like psoriasis. Tried NSID'S, sulfasalazine, MYX,

minocycline

> and finally ended up on prednisone. Had a knee replacement

that turned out

> I didn't really need at that time but the surgeon said that was

the most

> inflamed knee he had ever seen. Am now on Enbrel,

prednisone, Plaquinal

> (that doesn't make my non existent skin disease worse in fact

made what I

> did have go away) and a small dose of MTX. The diagnosis

was finally made

> when my big toe nail spent 6 months turning blue, getting thick

and peeling

> off. The rheumy took one look at that and said that is

psoriasis. I am B27

> positive so I guess that is not a surprise. I have had bouts of

> costrocondritis, shortness of breath and ankle swelling also.

Is it normal

> to have lots of outside the joint symptoms such as trochanteric

bursitis,

> tendonitis and muscle aches. I also have insomnia and sleep

apnea, I hope

> to get a CPAP machine in June.

> This has been a very long journey for me and I am still not

100% convinced

> that this is the right diagnosis. It has been very interesting to

read the

> info on this sight. The more I read about the various diseases

makes me

> wonder how the docs ever tell them apart.

[Guest guest]

I guess turning blue isn’t a good explanation, it turned like it was

bruised, started in the inner corner and spread across the whole nail then

the nail got thick and wavy, then I could tell it wasn’t attached and peeled

it off. There is a thin covering but it only covers a little more than half

of the nail bed, the top is covered with skin. That was 5 weeks ago and I

still can’t tell if it will grow out or not. The dermatologist called the

rash a nondescript red rash and was on my elbows and several patches on my

face but just looked like eczema with no silver scales. Methotrexate did

nothing for it but it disappeared with Plaquinal, which is supposed to make

psoriasis worse. I hadn’t been able to wear a lot of earrings either

because my holes were weepy and inflamed. The rash had been there for about

a year, the ears for 3=4 years. I also had a lot of dandruff like flakes in

my scalp with a lot of little sores. That went away with some medication

the derm gave me and hasn’t come back.

Re: [ ] Newby

In a message dated 5/17/02 5:26:28 PM Central Daylight Time,

annemills@... writes:

> The diagnosis was finally made

> when my big toe nail spent 6 months turning blue, getting thick and

peeling

> off.

The part about the nail turning blue doesnt sound like psoriasis to me the

rest does though. What does everyone else think about that? A more accurate

progression based on my experience would be any one or a combination of;

turning yellow or brown (oil spot), dots or streaks of blood from tiny

hemorages beneath the nail, the nail seperating from the flesh underneath

(oncholysys), seperation of the nail from the cuticle.

<Had some rash but it didn't really look like psoriasis.> Can you describe

what the rash did look like and how long did the rash last? Orin

[Guest guest]

In a message dated 8/20/2003 9:10:20 AM Eastern Daylight Time,

bhecca2000@... writes:

> ..My feet had been so swollen that I could not fit in shoes with backs.

> That was a huge thing to me! Today, for the first time in 4 years, I rode my

> horse. It was a challenge. I had lots of help getting on and off, but I did

it!

> Long story short, I wanted to thank this list. It has been your writings

> that have helped me realize I can do anything.

> Thank you,

That is great Becky. I am on Enbrel and started mtx yesterday. I would

like to know from anyone on mtx when to expect the side effects like nausea,

fatigue, vomiting, etc. I took 2 pills yesterday at 7pm and 2 more at bedtime.

Today I have no side effects like the nausea, etc. The only thing I do have

is a kind of weird taste in my mouth almost like a metallic taste. Does

anyone have anything like this? Also if this mtx is going to work then can

some

of you share how long it took. The Enbrel doesn't do much for me at all.

Janet

[Guest guest]

> ... The first 3 years I helped myself with acupuncture and

> herbs. While this certainly helped me a great deal, it did not

> stop the progression of the arthritis. My fingers are all bent

> as are my toes... My feet had been so swollen that I could not

> fit in shoes with backs.

> ...

> I started taking a mix of Vioxx, prednisone and Methotrexate

> 5 months ago. The first thing that happened was I was able to

> wear regular shoes again!.... That was a huge thing to me!

> Today, for the first time in 4 years, I rode my horse.

Congratulations of your first post Becky! :-)

It illustrates very clearly why I cringe whenever I read a message by

someone promoting so called " alternative treatments " (acupuncture,

herbs, vitamins, diet, etc) for treating PA instead of listening to

their doctor's medical advice and taking medicines to stop the

progression of PA. I have no problem with the use of alternative

treatments as an ADJUNCT to traditional medical treatment, and in

fact I think anything that makes us feel better is a good thing; BUT,

as your story clearly illustrates, it is pure folly to think that

unproven " alternative " treatments will provide any long term benefit

to those of us with PA. Although alternative treatments may not be

harmful in themselves, the danger in them is that just as in your

case, relying on them may delay treatment with medicines that are

actually effective in slowing the progression of our disease.

Just think of how much better off you would be today if you had

started taking the medicines your doctor recommended right away

instead of (or in addition to), relying on your chosen " alternative "

treatments. :-(

-- Ron

[Guest guest]

I am sorry that you had so much problem!! I strongly advocate using what is

best for YOU! I began using medication advised by my doctors, and they did

notthing to help me. They made me feel worse! We tried many medications,

adjusted doses, etc. The meds did not help me feel better, but man did I

feel those side effects. Under the supervision of my rhuematologist, I take

alfalfa, go for massages, and control my diet. This helps my pain and

causes no side effects. My rhuematologist is open about any progression of

my arthritis. He knows the dicision is up to me, and that either way my

arthritis will spread. In short: different things help for different

people.

>From: " ron_s_dotson " <PA@...>

>Reply-

>

>Subject: [ ] Re: newby

>Date: Wed, 20 Aug 2003 13:48:56 -0000

>

>

> > ... The first 3 years I helped myself with acupuncture and

> > herbs. While this certainly helped me a great deal, it did not

> > stop the progression of the arthritis. My fingers are all bent

> > as are my toes... My feet had been so swollen that I could not

> > fit in shoes with backs.

> > ...

> > I started taking a mix of Vioxx, prednisone and Methotrexate

> > 5 months ago. The first thing that happened was I was able to

> > wear regular shoes again!.... That was a huge thing to me!

> > Today, for the first time in 4 years, I rode my horse.

>

>

>Congratulations of your first post Becky! :-)

>

>It illustrates very clearly why I cringe whenever I read a message by

>someone promoting so called " alternative treatments " (acupuncture,

>herbs, vitamins, diet, etc) for treating PA instead of listening to

>their doctor's medical advice and taking medicines to stop the

>progression of PA. I have no problem with the use of alternative

>treatments as an ADJUNCT to traditional medical treatment, and in

>fact I think anything that makes us feel better is a good thing; BUT,

>as your story clearly illustrates, it is pure folly to think that

>unproven " alternative " treatments will provide any long term benefit

>to those of us with PA. Although alternative treatments may not be

>harmful in themselves, the danger in them is that just as in your

>case, relying on them may delay treatment with medicines that are

>actually effective in slowing the progression of our disease.

>

>Just think of how much better off you would be today if you had

>started taking the medicines your doctor recommended right away

>instead of (or in addition to), relying on your chosen " alternative "

>treatments. :-(

>

>-- Ron

>

>

>

_________________________________________________________________

<b>MSN 8:</b> Get 6 months for $9.95/month

http://join.msn.com/?page=dept/dialup

[Guest guest]

Welcome Becky! Congrats on literally getting back on the horse.

I'm glad you posted.

Penny

> Hello. I have been a lurker for a few months and wanted to speak

up today. It has been this list that has given me some of my

strengths lately.

> I got sick 4 years ago and was diagnosed with rheumatoid

arthritis...last year after a long battle I got the proper

diagnosis. PA. The first 3 years I helped myself with acupuncture

and herbs. While this certainly helped me a great deal, it did not

stop the progression of the arthritis.My fingers are all bent as are

my toes... I still balked at the medicine. (I'm very hardheaded)

Quite honestly I was afraid of it. I got a new doctor and

rheumatologist that have been very helpful and I started taking a

mix of Vioxx, prednisone and Methotrexate 5 months ago. The first

thing that happened was I was able to wear regular shoes again!...My

feet had been so swollen that I could not fit in shoes with backs.

That was a huge thing to me! Today, for the first time in 4 years, I

rode my horse. It was a challenge. I had lots of help getting on and

off, but I did it! Long story short, I wanted to thank this list.

It has been your writings that have helped me realize I can do

anything.

> Thank you,

> Becky in Tennessee

>

>

[Guest guest]

---Welcome to the group Becky from Tennessee! Congtatulations on

riding your horse. I bet that felt like a giant accomplishment for

you.

Marti

[Guest guest]

> In a message dated 8/20/2003 9:10:20 AM Eastern Daylight Time,

> bhecca2000@c... writes:

> Janet,

I also had that weird tast in my mouth. Folic acid does help with

that and I now take 2 tablets a day and it keeps it under control.

Sometimes it can take months for the MTX to work so don't become

discouraged. I'd be interested to hear how the combo works since

that is what my Dr. wants to do next.

Debbie

>

> > is a kind of weird taste in my mouth almost like a metallic

taste. Does

> anyone have anything like this? Also if this mtx is going to

work then can some

> of you share how long it took. The Enbrel doesn't do much for me

at all.

> Janet

>

>

>

[Guest guest]

In a message dated 8/21/2003 7:52:39 AM Eastern Daylight Time,

dcoker@... writes:

> I also had that weird tast in my mouth. Folic acid does help with

> that and I now take 2 tablets a day and it keeps it under control.

Thanks Debbie,

I see my rheumy next week. Can you tell me what dose of folic acid you take?

Janet

[Guest guest]

Thanks for the warm welcome. Sounds to me like you think I probably do have Samters. Thanks for the assurance. I thought the criteria involved an asthmatic response to aspirin, which I don't think I have. My asthma results from environmental allergies.

One big problem I'm having is inflammatory pain, which is a problem since I can't take NSAIDs or -2's. I recently got a long-term cortisone shot and was put temporarily on a muscle relaxer to help with the hip pain from arthritis and spondylitis. I am very interested in what folks in the group do for chronic pain that's beyond what can be handled by Tylenol.

Answering the questions posed to me -- I live in Georgia. I think I have pretty good doctors. My primary doc sends me to all the appropriate specialists for treatment of my various medical problems and so far they've helped me a lot. I have a variety of auto-immune diseases, probably the most problematic is Sjogrens Syndrome since it seems to adversely effect treatment for every other problem. My Sjogrens diagnosis was pretty weird. I'd been complaining to docs about mouth and eye dryness for years, they'd do a diabetes test, tell me it was negative, then drop the subject. Finally one doc, whom I never really got along with but had temporarily due to insurance problems, said that I was describing Sjogrens Syndrome, but I couldn't possibly have that, it was too rare. He was also strange enough to say they Sjogrens is diagnosed only by ophthalmologists, so sent me to one. That ophthalmologist is great, I still see him. The first visit, he did some testing and subsequently make a lot of improvements in my care, but he never actually told me I had Sjogrens until I ask him point blank. He said, "Of course you do! There's no question." Strangely enough, when I next had visits with my dentist and my OB/GYN, I told each I'd been recently diagnosed with Sjogrens and they responded that Sjogrens was already in my chart, it was obvious to them and they were surprised no doctor ever told me I had it. I since have begun checking charts over doc's shoulders to be sure they tell me what they are writing down. It's amazing how much more info goes into the charts than the doc actually tells the patient. Years later, I did finally see a Rheumy for another problem and he confirmed the Sjogrens, but he then said that it wasn't a big enough problem to treat. I don't see him anymore!

Robbie

[Guest guest]

Robbie,

I don't think the criteria have to involve an asthmatic response to

aspirin, but you must have some sensitivity to aspirin. However, I

want to mention that the asthma associated with Samters is not only

AT THE TIME of taking aspirin -- it can be basically all the time.

The theory is that a chemical reaction gets set off in your body at

some point and it is self-perpetuating, so that people with Samters

have a worse asthma course, in general, than other asthmatics.

That's why desensitization works for some because it is supposed to

stop that cycle.

So it might seem like the asthma is environmental or other factors,

but it can also be attributed partially to the Samters. Certainly

there are environmental triggers for my asthma, too, but it's not

only those that cause my asthma.

I have a great product for inflammation that I use. I've

recommended it to many people here but I don't think anyone ever

tried it. It's called UltraInflamX. I think it honestly works

wonders against inflammation. I don't use it all the time anymore

but when I have flare-ups of rheumatologic type of pain I use it and

it takes away the inflammation and hence the pain. It is not a

painkiller per se, and sometimes if the pain is really bad I take a

heavy duty painkiller, one dose, while I am waiting for the

UltraInflamX to work. Of course, one could potentially take the

UltraInflamX all the time and maybe it woudl work so that the acute

painkillers would not be needed. I can basically only take

Ativan/lorazepam, which helps certain types of pain for me,

Neurontin for certain other types of pain and when I really need it,

hydromorphone.

I also am a strong believer in exercise for pain. I have a

fibromyalgia type of condition and although I do get pain FROM

exercising, my chronic pain is definitely much worse when I do not

get any exercise. I've gotten into such pain cycles that I can't

get out of bed. So I've had to force myself through it and learned

that I feel much better if I exercise.

Hope this helps a bit,

Lori

[Guest guest]

Robbie...I was going to try a product Lori suggested but I have no

money right now! I usually take Ultram (Tramadol) if my pain gets

overwhelming. I have been walking daily despite being in pain and so

tired I can't see...and it is helping. I started Lexapro for the

depression brought on by the chronic pain/illness and that has helped

too. My rheumy wants to start Neurontin but I told him I will save it

for later just in case the Ultram doesn't work. I can't take anything

other anti-inflammatories or pain relievers without reaction so far.

My asthma component is chronic along with the sinus issues. I also

have fibromyalgia and other autoimmune disorders. I think the numbers

are growing among Samterites to cross over to other disorders. Keep us

posted as to what is going on and what works for you, we love sharing

new ideas! Trudy.

[Guest guest]

Lori...I agree! I have been walking for a month now, in the woods at a

slow pace, but up and down the hills. I have lost twenty pounds and

the pain is lessened. I was going to try the Inflammex but don't have

any $ right now! I also noted that my diet affects how I feel too, and

when I eat sugar I am a mess. Who knows what that is about. My sinus

is pretty " goppy " lately as we have high humidity and barometric

changes going on daily. It keeps trying to rain but won't, and that

wreaks havoc with me for some reason too. Trudy.

I also am a strong believer in exercise for pain. I have a

> fibromyalgia type of condition and although I do get pain FROM

> exercising, my chronic pain is definitely much worse when I do not

> get any exercise.

> Lori

[Guest guest]

> hey everyone i am new to this group...and new to psoriatic arthritis.

> just alittle bit about my self..i am 25 years old,military wife and

> have a 2 year old daughter,living in west virginia. i just found out

> today that i have psoriatic arthritis along with psoriasis.although i

> have been dealing with the pains of arthritis for years now.i am so

> thankful to have found this group on line...hopefully i can learn

> alittle bit more about this....its been a long road.oh and i start

> taking mobic and lunesta tomorrow.hopefully there are some good things

> about these medications.

>

> Amarie

>

>

> Hi Amarie,

I have had excellent relief with mobic. I do envy you at least you have

a doctor that will say " psoriatic arthritis " .

I am still trying to get it said..

Happy Turkey Day

Carol

[Guest guest]

In a message dated 11/24/05 12:16:47 PM GMT Standard Time,

feaster@... writes:

hey everyone i am new to this group...and new to psoriatic arthritis.

just alittle bit about my self..i am 25 years old,military wife and

have a 2 year old daughter,living in west virginia. i just found out

today that i have psoriatic arthritis along with psoriasis.although i

have been dealing with the pains of arthritis for years now.i am so

thankful to have found this group on line...hopefully i can learn

alittle bit more about this....its been a long road.oh and i start

taking mobic and lunesta tomorrow.hopefully there are some good things

about these medications.

Hi Amerie,

I'm glad you could join us but sorry about the circumstances causing you to

do so. I hope the medication works for you quickly. Let us know how you get on

with it if you can.

Good luck,

[Guest guest]

Hi Amerie,

I am glad you found us, this group is wonderful. Full of knowledge,

experience and support. I am sorry to hear that you have PA but I

know that finally getting a diagnosis is a relief in itself. As far

as your medicines go, I don't know anything about Lunesta, but Mobic

has worked well for me. I have tried other anti-inflammatories and

even though Mobic is one of the older ones it has helped me alot with

the morning stiffness and pain. I also haven't had any side effects

from it. I am sure someone in the group knows about Lunesta and can

help with information on that. I truly hope the medicine gives you

some relief.

Pat

>

>

> In a message dated 11/24/05 12:16:47 PM GMT Standard Time,

> feaster@a... writes:

>

> hey everyone i am new to this group...and new to psoriatic

arthritis.

> just alittle bit about my self..i am 25 years old,military wife

and

> have a 2 year old daughter,living in west virginia. i just found

out

> today that i have psoriatic arthritis along with

psoriasis.although i

> have been dealing with the pains of arthritis for years now.i am

so

> thankful to have found this group on line...hopefully i can learn

> alittle bit more about this....its been a long road.oh and i start

> taking mobic and lunesta tomorrow.hopefully there are some good

things

> about these medications.

[Guest guest]

Hi, Gracie and welcome to the list. I am sorry to hear of your

granddaughter's struggle. It sounds like she has a very aggressive form

of JRA and the meds are probably the best thing to stop any more damage.

As my son's first ped rheumy told us, the goal is for these kids to be

pain free. Any dr you work with should be striving for that. I think it

would be best if you could get her to a pediatric rheumatologist. They

are really experienced in general with how the disease affects kids.

Some folks here on the list drive over 2 hrs each way just to get to ped

rheumy, but they can tell you it is worth it. As Becki said in her

response to , I too am more afraid of the damage the disease can

do, than I am of the side effects of the meds. Sometimes it takes quite

awhile to figure out the right cocktail of drugs that will work best.

Please remember also that the adults in your granddaughter's life are

her advocates and the drs, while they are for the most part wonderful,

do not know everything. As you can tell by the fact that her pains were

blown off as " growing pains " , drs are not always right. If you need to

question them, do so. If you cannot get satisfaction from one, get a

second or third or fourth or whatever opinion to help this child get the

disease under control.

As for being involved with the Arthritis Foundation, it depends on what

they offer in the area. For me, I check out the website

www.arthritis.org on occasion and also have participated in the

Arthritis walks in our area. They do have various activities for kids

and perhaps may have some in your area. For me, my best support has been

this group. They understand what it is like to have a child with JRA. I

learn so much from the others here and from the medical posts. Your

daughter might want to check this list out and see that here is a safe

place to vent when she is frustrated and to see she is not the only mom

to have a child with JRA. My husband does not himself come to the list,

but I do share info and stories from here with him. If your daughter

finds it helpful or comforting to be involved with either the foundation

or the list, she should do it. As your granddaughter gets older, there

are summer camps for kids with JRA that a lot of the kids really enjoy.

You can find info about one in your area at the website.

Good luck to you and your family. Please invite your daughter to check

us out. She may find some comfort here. Hugs, Michele ( 18,

spondy)

Newby

Hi,

My granddaughter, Savannah has JRA. She's three. She was diagnosed

about a year ago. Before that, the regular docs kept saying it was

growing pains. She's been on pediapred, methotrexate, and is now on

Enbrel, with Naprosyn. However, the JRA is not going into

remission. She has seen a doc in the OKC area of Oklahoma, who is

supposed to be one of the best in the field (so we were told). But

now that rhuematologist is transferring her to a pediatrician, and a

children's hospital. They want to put her back on Methotrexate, but

we are so worried about that, as she doesn't eat hardly anything as

it is, and when she was on methotrexate, she stopped eating almost

completely, and her growth stopped also. when they took her off the

pediapred and methotrexate, she started eating againg and started

growing again. She has the disease in many joints. And has

deformation already in her knees. Much swelling in the knees, feet,

ankles, wrists, hands, as well as pain in those areas, along with

pain in hips, and shoulders. The enbrel has helped, but still hasn't

slowed it down.

Any advice you can give us would be greatly appreciated, and if

anyone knows any doctors in the OKC area, we would appreciate if you

would let us know. Also...how important is it that my daughter get

involved with the arthritis foundation? The rhuematologist thought

it would be good, but like so many others, her husband just isn't

much into that kind of thing.

I worry for my granddaughter's health and what the enbrel is doing to

her little body

Thanks in advance,

Gracie

[Guest guest]

Lora, I understand your frustration, I would suggest offering to help them better understand autism and what it is all about. My oldest son had a rough start to his year and with persistance and working with the special educ coordinator I was able to share current information and help to educate the teachers at the school. I would also suggest find a program/support group in your area. Robinluliq36 <luliq36@...> wrote: Hi, I just recently found out

my 15 year old son has Aspergers. I have known for several years there was something diferent about him but three psyc evals were all inconclusive. It took a visit from a pediatric psychiatrist to give us a dx. I have been unable to get much help at his school thus far and I am really frustrated and angry at the way the school personel treats him. I have had several meetings with them and tried my best to tell them what he needs but I am not sure what he is allowed to have done for him. All they seem to want to do is punish him for not doing work in class, and for behavioral problems. I told them he needed to be taught how to socialize, and what is and isn't appropriate in situations. The school treats me like a stupid over protective mom. I am sick of Josh suffering because I don't know what to do. Any suggestions you can give me would be wonderful.Thanks in

advanceLora Robin S.

"Inspired Mom" Autism Advocate

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

High schools can be really difficult to navigate. This is probably harder for you because you haven't had help for him in the past either. What you need to do is get him an IEP. Write a request for an educational evaluation to the principal of the school and CC a copy to the director of sped services. They should contact you to set up testing. Once he has an IEP, you will write down his various needs in the IEP and the school needs to follow them. You will still have to be a heavy advocate for him.

As for what he is allowed to have done - he can have what he needs to receive an appropriate education. So if he has problems turning his work in, for example, that can go on the IEP and he can receive help getting this done, extra time when assignments are going to be late, etc. He can have most any accommodation according to his need.

If he already has an IEP and they are ignoring it, write back and we can talk about that!

RoxannaAutism Happens

( ) Newby

Hi, I just recently found out my 15 year old son has Aspergers. I have known for several years there was something diferent about him but three psyc evals were all inconclusive. It took a visit from a pediatric psychiatrist to give us a dx. I have been unable to get much help at his school thus far and I am really frustrated and angry at the way the school personel treats him. I have had several meetings with them and tried my best to tell them what he needs but I am not sure what he is allowed to have done for him. All they seem to want to do is punish him for not doing work in class, and for behavioral problems. I told them he needed to be taught how to socialize, and what is and isn't appropriate in situations. The school treats me like a stupid over protective mom. I am sick of Josh suffering because I don't know what to do. Any suggestions you can give me would be wonderful.Thanks in advanceLora

[Guest guest]

Hi Roxanna,

Josh does have an IEP. He has had one for a couple of years. It

was given to him because of an English learning deficit. He spells

and writes at about a third or fourth grade level. The problem isn't

getting an IEP, it is getting what Josh really NEEDS in the IEP. I

tried to get them to ok math homework and tests that do not need to

show work. They refused saying if Josh doesn't show his work, he will

not be able to advance in math. He does math problems in his head. He

always has. Writing is a serious problem for him and math is no

exception.

The school will not let him type assignments, do math without

showing work, and they insist he takes notes in class. I have tried

to be an advocate for him but it has left me just wishing school was

over for him. I am tired and frustated beyond comprehension. I tried

to get hold of an advocate to help me with his IEP but I got no

response after 3 calls and messages left on LINCS message machine.

I wonder if things will ever get better or will my son be left

behind as usual.

OK venting over with

I wish confrontation wasn't so hard for me. Anybody have a spare

backbone. LOL

Lora

>

> High schools can be really difficult to navigate. This is probably

harder for you because you haven't had help for him in the past

either. What you need to do is get him an IEP. Write a request for

an educational evaluation to the principal of the school and CC a

copy to the director of sped services. They should contact you to

set up testing. Once he has an IEP, you will write down his various

needs in the IEP and the school needs to follow them. You will still

have to be a heavy advocate for him.

>

> As for what he is allowed to have done - he can have what he needs

to receive an appropriate education. So if he has problems turning

his work in, for example, that can go on the IEP and he can receive

help getting this done, extra time when assignments are going to be

late, etc. He can have most any accommodation according to his

need.

>

> If he already has an IEP and they are ignoring it, write back and

we can talk about that!

>

> Roxanna

> Autism Happens

> ( ) Newby

>

>

> Hi, I just recently found out my 15 year old son has Aspergers. I

have

> known for several years there was something diferent about him

but

> three psyc evals were all inconclusive. It took a visit from a

> pediatric psychiatrist to give us a dx. I have been unable to get

much

> help at his school thus far and I am really frustrated and angry

at the

> way the school personel treats him. I have had several meetings

with

> them and tried my best to tell them what he needs but I am not

sure

> what he is allowed to have done for him. All they seem to want to

do is

> punish him for not doing work in class, and for behavioral

problems. I

> told them he needed to be taught how to socialize, and what is

and

> isn't appropriate in situations. The school treats me like a

stupid

> over protective mom. I am sick of Josh suffering because I don't

know

> what to do. Any suggestions you can give me would be wonderful.

> Thanks in advance

> Lora

>

[Guest guest]

--I also have a 15 year old son with aspergers. Your story is my

story except for My son's name is Kaleb. I have always known

something was different but could not get a dx. The school personnel

ant teachers were awful! I even had his 5th grade teacher tell

me " Well maybe if you spent some time with him.... " Kaleb got dx

about 2 years ago. Things do get better. I since have him on an IEP

and a one on one aide (Dianne) who was sent from God. I had to fight

big time for this. I would love to help you if you want my

suggestions with the school district. Your son has rights. The

district has a responsibility to give him an education no matter what

it takes! I have always been very passive but have learned to be

assertive through this. You can e-mail me if you want

Bronson_1234@... Take Care,

- In , " luliq36 " <luliq36@...> wrote:

>

> Hi Roxanna,

> Josh does have an IEP. He has had one for a couple of years. It

> was given to him because of an English learning deficit. He spells

> and writes at about a third or fourth grade level. The problem

isn't

> getting an IEP, it is getting what Josh really NEEDS in the IEP. I

> tried to get them to ok math homework and tests that do not need to

> show work. They refused saying if Josh doesn't show his work, he

will

> not be able to advance in math. He does math problems in his head.

He

> always has. Writing is a serious problem for him and math is no

> exception.

> The school will not let him type assignments, do math without

> showing work, and they insist he takes notes in class. I have tried

> to be an advocate for him but it has left me just wishing school

was

> over for him. I am tired and frustated beyond comprehension. I

tried

> to get hold of an advocate to help me with his IEP but I got no

> response after 3 calls and messages left on LINCS message machine.

> I wonder if things will ever get better or will my son be left

> behind as usual.

>

> OK venting over with

> I wish confrontation wasn't so hard for me. Anybody have a spare

> backbone. LOL

> Lora

>

>

> >

> > High schools can be really difficult to navigate. This is

probably

> harder for you because you haven't had help for him in the past

> either. What you need to do is get him an IEP. Write a request

for

> an educational evaluation to the principal of the school and CC a

> copy to the director of sped services. They should contact you to

> set up testing. Once he has an IEP, you will write down his

various

> needs in the IEP and the school needs to follow them. You will

still

> have to be a heavy advocate for him.

> >

> > As for what he is allowed to have done - he can have what he

needs

> to receive an appropriate education. So if he has problems turning

> his work in, for example, that can go on the IEP and he can receive

> help getting this done, extra time when assignments are going to be

> late, etc. He can have most any accommodation according to his

> need.

> >

> > If he already has an IEP and they are ignoring it, write back and

> we can talk about that!

> >

> > Roxanna

> > Autism Happens

> > ( ) Newby

> >

> >

> > Hi, I just recently found out my 15 year old son has Aspergers.

I

> have

> > known for several years there was something diferent about him

> but

> > three psyc evals were all inconclusive. It took a visit from a

> > pediatric psychiatrist to give us a dx. I have been unable to

get

> much

> > help at his school thus far and I am really frustrated and

angry

> at the

> > way the school personel treats him. I have had several meetings

> with

> > them and tried my best to tell them what he needs but I am not

> sure

> > what he is allowed to have done for him. All they seem to want

to

> do is

> > punish him for not doing work in class, and for behavioral

> problems. I

> > told them he needed to be taught how to socialize, and what is

> and

> > isn't appropriate in situations. The school treats me like a

> stupid

> > over protective mom. I am sick of Josh suffering because I

don't

> know

> > what to do. Any suggestions you can give me would be wonderful.

> > Thanks in advance

> > Lora

> >

>

[Guest guest]

Don't I wish.. i don't have one either... Maybe there's a backbone store somewhere... I get all tongue tied, upset and cry everytime we have a meeting..I sympathize with you... Toni

( ) Newby> > > Hi, I just recently found out my 15 year old son has Aspergers. I have > known for several years there was something diferent about him but > three psyc evals were all inconclusive. It took a visit from a > pediatric psychiatrist to give us a dx. I have been unable to get much > help at his school thus far and I am really frustrated and angry at the > way the school personel treats him. I have had several meetings with > them and tried my best to tell them what he needs but I am not sure > what he is allowed to have done for him. All they seem to want to do is > punish him for not doing work in class, and for behavioral problems. I > told them he needed to be taught how to socialize, and what is and > isn't appropriate in situations. The school treats me like a stupid > over protective mom. I am sick of Josh suffering because I don't know > what to do. Any suggestions you can give me would be wonderful.> Thanks in advance> Lora>

[Guest guest]

Do you think the problem is your lack of backbone really?

They are violating his rights as a person with a disability. All of those accommodations and modifications can and should be available to him. They can't just say "no" (even though they did just that!)

If I were you I would do two things. One, I would search harder for help from an advocate. What state are you in? You just have to keep calling people. One person may lead to another and to another until you find someone who can come and help you. Do not give up. Look up your state and disability organizations. (State disability) where "state" is your state. Google autism, google AS, google sped and your state name. Call and email people you find and ask for help until you find someone willing to help.

Second, I would start documenting everything from the school and proceed to file a complaint with the state. I would write and request an IEP meeting. At the meeting I would request these services. WHen they say "no", I would ask to have this in writing. It is your right to have "PWN" or "prior written notice" which means when they deny a service, they have to put in writing why they made this decision and what other things were considered in making this decision. If they refuse to give you PWN, that is just another thing to document for your complaint.

In addition, I am concerned that he reads and writes at a 3rd grade level. This is very serious. I think a person must be able to read and write at a 5th or 6th grade level in order to be competent at getting through life - reading directions, street signs, job applications, etc. This is incredibly important. I would want to know what steps they are taking to increase his scores in reading and writing. That should be a major part of his IEP and he should be making marked progress. I would also ask for compensatory services for him so that he can get tutored over the summer for their lack of providing services before now. It seems like he has major catching up to do and not a lot of time to do it. Also, being so far behind in reading and writing - the two major abilities one uses in school - means that he is going much slower in doing just every day work. He needs some major accommodations for now until he can get farther ahead in his skills. So please don't get defeated! When they kick you down, you have to turn around and come back with more until you get him some help. I know it's not so easy as I might make it sound - I've been there myself! That is why I am writing to you now. Don't hesitate to PUSH PUSH PUSH!

RoxannaAutism Happens

( ) Newby> > > Hi, I just recently found out my 15 year old son has Aspergers. I have > known for several years there was something diferent about him but > three psyc evals were all inconclusive. It took a visit from a > pediatric psychiatrist to give us a dx. I have been unable to get much > help at his school thus far and I am really frustrated and angry at the > way the school personel treats him. I have had several meetings with > them and tried my best to tell them what he needs but I am not sure > what he is allowed to have done for him. All they seem to want to do is > punish him for not doing work in class, and for behavioral problems. I > told them he needed to be taught how to socialize, and what is and > isn't appropriate in situations. The school treats me like a stupid > over protective mom. I am sick of Josh suffering because I don't know > what to do. Any suggestions you can give me would be wonderful.> Thanks in advance> Lora>

[Guest guest]

Lora,

I went thru similar with showing work on math. My son also did/does

math in his head (sort of varies with what they are studying; some

things he shows steps, some not). He's now a senior, the problems we

had were in middle school. Some teachers were OK with his not

showing work, they knew he did it in his head. Others wanted to see

the steps. SIGH! I finally got one to say just show the work on one

problem. Duh! If he could show on " one " he could show on " all. "

His answers were correct like 99.99% of the time, I really didn't

understand the problem.

However, high school we haven't had this problem turn up. If your

son isn't getting correct answers, then I see why they want the

steps, to see where he's messing up. But if he's getting them

correct, then argue about how he apparently knows the steps " in his

head " he just can't show/tell them. At the time I really, really

looked for something to relate this to my son's Aspergers, but never

found anything. But you can try telling the school that it's due to

his Aspergers. -- long story, but short version: when middle school

kept complaining about the math steps and my son's grades were going

down, I wrote a formal letter to the school requesting my son be

tested for a learning disability (LD). And I gave the math steps as

a reason; saying he apparently has some " processing " problem since he

can't write/say the steps he uses to get the answers and it's

affecting his grades (since teachers count problems wrong). You

could try this for your son, request the testing IN WRITING. Hey, I

don't know what Josh's note taking problem is, but my son couldn't

keep up with notes at one time (dysgraphia diagnosis, motor skill of

writing is difficult), so we did get put in his 504 Plan that he can

get teacher and student notes; and I think I either told or had put

in his plan that he was never to be graded on his notes or on the

amount of notes he took in class. One teacher was nice enough to

give him the vocabulary words with the definitions so he didn't have

to look them up and define them.

Socialization - SIGH. OK - schools argue that is not their problem.

That is " outside " of school/education. YOU can argue that some

teachers have students get in groups to work or team up with others.

And THAT requires the social skills and communication skills. --

this was a potential problem in middle school that I never got to

argue. High school actually went better for my son.

Why can't Josh type assignments, or rather, why does he need to?

Hard to believe schools wouldn't be okay with that; easier to read!

Confrontation - I'm a wimp in person with the schools. But on the

phone or by email or by a written letter, I do great! Start your

paper trail with the school. If you write it, they have to answer in

writing; or if they call to give you the answer, listen to their

answer and then tell them you would like that in writing that week.

Quick thoughts,

single mom, 3 sons

, 18, with dysgraphia, OCD and Aspergers/HFA

>

> Hi Roxanna,

> Josh does have an IEP. He has had one for a couple of years. It

> was given to him because of an English learning deficit. He spells

> and writes at about a third or fourth grade level. The problem

isn't

> getting an IEP, it is getting what Josh really NEEDS in the IEP. I