Re: My Letter

[Guest guest]

What a great letter - as I said in a previous post - a letter is a

very powerful tool & you certainly have made the most of it.

I bet you felt better getting it all off your chest too! Well done!

My only question is...did you deliver it to Ms District Manager?

Whether you do send it or not - I'm sure it's been a help to you.

I hate being patronised too. I usually get " your hands aren't too

deformed " - at that point I take off my shoes and watch their jaws

drop. People are generally kind, I must remember not to focus on the

TWIT FACTOR too much.

All the best from

Deb in Oz.

--- In , " shauna4343 " <Shauna4343@...>

wrote:

>

> Dear Ms. District Manager:

>

> Thank you for taking the time to work out the scheduling issues

with

> me. I appreciate your extra time and attention. I can't imagine

> what your job is like, the constant travel and demands upon your

> time. I want you to know that I really, truly love my job.

>

> This job suits me. It is close to home, it is part time. It is a

> perfect creative outlet for me. And just enough contact with the

> retail community to keep it " real " so to speak.

>

> I work hard when I clock in and I challenge anyone to find fault

with

> my work ethic.

>

> But on a personal note I am compelled to share with you something

> that has bothered me since I met you.

>

> It is your statements that because you have a sister-in-law that

has

> RA you feel you are " intimate " with this disease. Furthermore, I

> find it inappropriate for you to make a distinction between

challenge

> and disability in regard to RA.

>

> I know you mean well Ms. District Manager, but believe me, when

> someone who does not have RA says they have an intimate

understanding

> of the disease because someone they know has it, it comes across

as

> presumptuous, even arrogant and condescending.

>

> Until someone has spent years trapped in a body that is hell bent

on

> destroying itself in the most painful and humiliating way

possible,

> you simply cannot understand. There is no intimacy.

>

>

> You can empathize, you can sympathize, be supportive. Accommodate

and

> encourage but you will never know and understand with intimacy the

> debilitating effects of this disease. The unimaginable pain, pain

> that is so unbelievable as to be madness in and of itself.

>

> You can't possibly understand what this disease and it's never

ending

> pain and destruction to one's body does to one's spirit. To be

> diagnosed as a child. To be given a pill at 17 and told, oh by

the

> way this will probably make your hair fall out....To wake up

somedays

> in so much pain as to be immobile. Unable to walk to the bathroom

to

> relieve yourself.

>

> To be told you can't have a child at this point in time because

even

> if a pregnancy were to come to full term the birth defects will be

> devastating because the RA meds you are taking at that time are

> mutagenic.

>

> To watch your fingers hands and arms and wrists and knees and hips

> and ankles and neck and feet and elbows and skin disintegrate,

twist

> and become deformed. To be unable to dress yourself, to feed

> yourself, to be unable to attend to your own toilet. When the

> disease flares to a point you can't stand on your own feet or hold

> anything in your own hand because your fingers have swollen to the

> size of bratwursts and are now immobile.

>

> When you have had to undergo more than a dozen surgeries before

the

> age of thirty to repair destroyed parts of your body. Then to add

> insult to injury you are covered with hideous scars and must

endure

> return trips to hospital because of life threatening DVTs that

have

> formed following surgery.

>

> To find yourself sitting on the kitchen floor crying with

frustration

> because you can't open a simple carton of milk or any number of

> containers or bottles or jars or buttons or zippers or jewelry

> clasps. Or to not be able to wear the heirloom rings passed down

to

> you because your fingers are swollen and twisted. Or not to be

able

> to tear open a simple paper sugar packet because the pain and

> swelling in your hands just won't let you go there.

>

> And that's just the physical aspects of the disease. Only those

who

> live the life understand the emotional devastation. The impact of

> the moment when it really sinks in this is for EVER. There is no

> cure. That this is your life, period. It won't get " better. "

What

> you have to look forward to is only more pain and destruction.

This

> is the aspect of the disease that leads to depression and feelings

of

> isolation and hopelessness.

>

> Or the shame and humiliation of having to apply for social

security

> disability assistance at 24 years of age because you can't work a

> full time job and can't support yourself on a minimum wage part

time

> job. Or dropping out of the social scene all together because you

> are too embarrassed to answer the inevitable question from

> others: " Well, what do you do for a living? " Or the humiliation

you

> experience when you see the look on a man's face when he

> finally " sees " the disease and you know he won't be calling you

the

> next day.

>

> Even if a miracle cure were devised today, the destruction is

still

> there and the destruction is painful. Those of us whose bodies

have

> been relentlessly attacked for years would still need pain

management

> protocols and would still be disabled in many areas of our lives

> because the damage has already been done and much of that damage

> cannot be repaired no matter how many prosthetics technology comes

up

> with.

>

> Personally, I find it inappropriate for you to make a distinction

> between challenge and disability when you do not live the life.

Yes,

> I agree with you it is a challenge. But when you can no longer:

> run, climb, ride a horse, ride a roller coaster, ski, roller-

skate,

> jog, play basketball, volleyball, tennis, racquetball, baseball,

> softball, field hockey, sky dive, spillunk, repel, ride a bicycle,

> bowl, do weight training or gymnastics or yoga or martial arts or

any

> sort of self defense, kayak, canoe, backpack, embroider, quilt,

take

> a bath in a bathtub without someone helping you in and out of the

tub

> or to safely stand in the shower or even sleep....and on and on

and

> on....

>

> My stars, after 40 years of living this life even I don't

> fully " know " or am fully " intimate " with the limitations,

challenges

> and disabilities of this disease.....the point I'm trying to make

> here, is if one is unable to participate in any physical endeavor

> they choose because they are not physically able that is

disability.

>

> When participation is not an option, it is a disability. When you

> spend years sending out your resume, get immediate calls for

> interviews and then you see the subtle look on the face of the

> interviewer when they see your deformed fingers and hands and

> suddenly the in depth interview comes to a screeching halt and of

> course you NEVER get a call back...thus denying you

> employment....that is not a challenge...that is a disability.

>

> When one cannot work a full time job that is a challenge. When

one

> cannot work a full time job that would provide them with the

economic

> and medical benefits that they need that is a disability. As you

so

> obviously pointed out to me on speakerphone last week.... " you're

just

> a part time employee, you don't even qualify for benefits... "

that

> was like a slap in the face.

>

> Because I can't work a full time job I am economically

discriminated

> against as a part time worker in terms of financial compensation,

> i.e., pay rate and health benefits. I find it appalling that

those

> who need health benefits the most are the ones that are denied it

> most often. And now that Congress and the health insurance

lobbyists

> have stepped in and screwed things up royally, people like me who

> need their meds the most can no longer afford them because the big

> gun RA meds are Tier 4 meds (catastrophic coverage).

>

> What this means for me and thousands like me, is yes, I can get my

RA

> med if I pay $482.50 a month for it every month through November

of

> each year. Then in December the insurance company steps up to the

> plate and I only have to pay $74.00 for the medicine. And then it

> starts all over again in January. And don't forget the monthly

> premium I pay them each month for the privilege of paying $482.50

a

> month for RA medicine. This amounts to more than one-third of my

> monthly income....which means I haven't had my arthritis medicine

for

> over two months now.

>

> What is that doing to my body? Nothing compared to the emotional

> stress that it is inflicting. The emotional stress of trying to

find

> a philanthropic organzation that will help me with the cost of the

> medicine I need. The emotional stress of filling out the endless,

> bureacratic red tape in triplicate must be notarized then

delivered

> to the rheumatologist who then must dictate the required letters

and

> then sign and fax the paperwork that the philanthropic

organizations

> need.

>

> The stress of waiting and waiting and waiting for help with the

cost

> of the medicine I need and praying I don't have a break through

flare

> in the interim. And those that do know and, are intimate with RA

> know that emotional stress is one of the most surefire and

> destructive triggers of a break through flare.

>

> I could go on and on Ms. District Manager. On and on with the

> intimate facts of this disease. Watching my skin turn to crepe

> paper. Knowing the disease is systemic and is destroying my heart

> and lungs and cardiovascular system as well as my bones and

sinew.

> Knowing that the very meds that keep the disease in check are

> destroying my liver. And knowing that if my liver were to fail I

> would not be a candidate for a transplant b/c of the preexistence

of

> the RA and the required meds that destroyed the first

liver....Catch

> 22.

>

> Knowing I'm not going to live to be an old lady. That is

something I

> have come to terms with and I'm okay with. But what I haven't

come

> to terms with is the look on my daughter's face when she realized

I

> wasn't going to live to be an " old lady. " That is the most

> devastating intimacy of all.

>

> I know you mean well Ms. District Manager, and I appreciate your

> attempts at empathy, but until you live the life you can never

know

> the many intimate devastations of it. So please, don't say to me

> that because you know someone who has RA you are intimate with it,

> that you " know " ... " Believe me, my sister-in-law has it and I am

> intimate with it, I know..... " because, honestly Ms. District

> Manager, with all due respect, you don't.

>

> Thanks for letting me share this with you.

>

[Guest guest]

could you explain the context of your letter? is this something

you're gong to send to an employer?

peace,

River

[Guest guest]

Yes, I sent it to the District Manager. I was upset with her for using the

disability/challenge differentiation to defend her position when I was trying

to negotiate a new schedule.

I got the schedule but she denied saying I was just a part time employee not

entitled to benefits, then she denied me my annual raise. The woman is an

(_______________) feel free to fill in the blank.

[Guest guest]

Good for you! Have you had a response?

I always like to believe that there is a degree of " Natural Justice "

in the world - Karma - call it whatever you like & I'm sure that

she'll get hers one day.

Here we have very strict laws governing disability in the workplace.

We have the Equal Opportunity Commission, who investigates on the

complainant's behalf. It is illegal to discriminate on the the

grounds of disability, race, gender...etc. Companies get exposed to

the media with lots of bad press, as well as having to pay huge

fines & compensation to the victim. Believe me - it's a place that

they don't want to end up!

Isn't there something similar in the US?

Deb in OZ.

>

> Yes, I sent it to the District Manager. I was upset with her for

using the

> disability/challenge differentiation to defend her position when I

was trying

> to negotiate a new schedule.

>

> I got the schedule but she denied saying I was just a part time

employee not

> entitled to benefits, then she denied me my annual raise. The

woman is an

> (_______________) feel free to fill in the blank.

>

>

>

>

>

[Guest guest]

Does she need a reason to deny you your annual raise, or is it like here in

Arizona where you have no protection at all? If she needs to have a reason for

denying the increase, can you go over her head?

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

I got the schedule but she denied saying I was just a part time employee not

entitled to benefits, then she denied me my annual raise. The woman is an

(_______________) feel free to fill in the blank.

[Guest guest]

Oh, it does sound like something is wrong....so many little things...it would okay I guess if it was one thing but all those different things you mention sound like AS or autism.

What kind of doctor have you taken him to? Has he seen a child Psychiatrist? And, when you go...you should have a list (written list) of all the stuff he does so that when you get in the office you don't forget. The walking on the toes ...makes a bell go off in my head...and the sucking on anything I think is a sensory issue which my son has to a degree....there is so much in play here but I would think you need a complete evaluation for him..especially the choking ..that sounds scary.

Jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: <jjcnkr@...>Subject: ( ) My Letter Date: Wednesday, August 6, 2008, 2:45 AM

This is the Letter I wrote and Brought to the School When I enrolled into Kindy.I am lost!My Son is almost 5 June 30th, I have knows something was off whenhe was a little over 2 years old and he forgot all his colors,numbers, and alphabet, he hopped all over the place on his tiptoes andwe nicknamed him tigger, I took him to his pediatrician and she toldme that it was ok and that that's common and he will remember them.Then 's was 3 and his yearly came around and he still didn't knowthem and he has always had issues drinking and choking on what ever hedrinks, no matter what type of cup he chokes on it, I also told herthat he was 3 now and cant count or say his alphabet or name anycolors correctly, he still could not hold silverware to feed himselfeven though he tried and tried, his whining was going way beyondnormal to me, I have 2 older children he would whine about 7

hours aday, he would fall all the time, He still spaces out, The ped told meyet again that he was just a clumsy 3 year old and would grow out ofit all.Then 's 4 year old yearly came around and he was chewing on hisstuffed animal rolling around the floor saying "googoogaagaa" then itwasn't normal!!!! He was still choking on anything he was drinking,still couldn't hold a fork or a spoon to eat, he could name colors andsay some of the alphabet and he could count to 6, But his whining wasstill a lot! his fits were lasting hours his new thing was everythingwent into his mouth, so bad I had to make sure nothing small was onthe floor or he would eat it or chew on it. She told me that a lot ofthis sounded like Aspbergers and she wanted me to take him to theChild Study Center in Dallas.Well we get to his appt and the last talks to me and I told hereverything! She talks to and I have to

copy what he says so shecan understand him, she had him look at 7 pictures and he pointed tothe others and then she had him Draw a circle, triangle, Square, thenshe had him run up and down the hall way and gave him a bunch of candyfor doing so, She then looks at me and says she doesn't see anything"wrong" but writes that he needs to have a OT Evaluation, PhysicalTherapy Eval. And a Speech Eval. She also wanted an EEG and MRI andthat was it, we went back after the EEG and MRI and she said alllooked Fine, not to come back unless he forgets anything again.The OT therapist said he was about 18 months behind, and she noticedmemory problems but she would work on that with him, and the Physicaltherapist said that the OT would go over most things she would andbetter to let the OT cover that, The speech therapist appt was soclose to me putting him into Kindergarten so I called the school andwell he will

be Evaluated this August.Everything I have read points to Autism!!! Why does no one see what I see?Why do I feel like the only one out? I have been asked so many rudethings and I have no clue what else to do, I have been asked why I amdoctor shopping, I have been asked why I want to get this diagnosis,why do I want to keep looking for something that is not there!I want someone to understand my concerns and to help me get the helpmy son needs!!He can say his alphabet now he can count to 10 on good days, he knowshis colors! He still hops on his tip toes; He has different things hehas gone through, for months he would lick his hands palms to the tipsof his fingers drool running down his arms, he would do this so much!He would have a toy hanging out of his mouth most of the day, he wouldsuck on his collar of his shirt all day, and today he has started toclap for no reason other to just

clap! He hates loud noises, Last weekhe started to get mad and his new thing to say is he is going to hurthimself so he climbs up on his bed and jumps off to try and get hurt(is this normal?) He still whines for hours during the day I have noclue why he is whining at all! He is obsessed over animals what typethere habitat and what they eat.He does so many other little things but right now at 1am I can't thinkof them, if any one can help me please do!Thank youJess

[Guest guest]

thanks for responding,

I have taken him to the Child study Center, he has had a mri and eeg

to rule out brain damage and seizures all was fine, I have need to

make appts for a behavoural therapist, genetic testing and OT and

Speech evaluation.His ped gave me a list of names to contact to make

these appts. she had told me that something is not right now for well

over a year and finding the right doctor is the key.

>

> From: <jjcnkr@...>

> Subject: ( ) My Letter

>

> Date: Wednesday, August 6, 2008, 2:45 AM

>

>

>

>

>

>

> This is the Letter I wrote and Brought to the School When I enrolled

> into Kindy.

>

> I am lost!

>

> My Son is almost 5 June 30th, I have knows something was off when

> he was a little over 2 years old and he forgot all his colors,

> numbers, and alphabet, he hopped all over the place on his tiptoes and

> we nicknamed him tigger, I took him to his pediatrician and she told

> me that it was ok and that that's common and he will remember them.

>

> Then 's was 3 and his yearly came around and he still didn't know

> them and he has always had issues drinking and choking on what ever he

> drinks, no matter what type of cup he chokes on it, I also told her

> that he was 3 now and cant count or say his alphabet or name any

> colors correctly, he still could not hold silverware to feed himself

> even though he tried and tried, his whining was going way beyond

> normal to me, I have 2 older children he would whine about 7 hours a

> day, he would fall all the time, He still spaces out, The ped told me

> yet again that he was just a clumsy 3 year old and would grow out of

> it all.

>

> Then 's 4 year old yearly came around and he was chewing on his

> stuffed animal rolling around the floor saying " googoogaagaa " then it

> wasn't normal!!!! He was still choking on anything he was drinking,

> still couldn't hold a fork or a spoon to eat, he could name colors and

> say some of the alphabet and he could count to 6, But his whining was

> still a lot! his fits were lasting hours his new thing was everything

> went into his mouth, so bad I had to make sure nothing small was on

> the floor or he would eat it or chew on it. She told me that a lot of

> this sounded like Aspbergers and she wanted me to take him to the

> Child Study Center in Dallas.

>

> Well we get to his appt and the last talks to me and I told her

> everything! She talks to and I have to copy what he says so she

> can understand him, she had him look at 7 pictures and he pointed to

> the others and then she had him Draw a circle, triangle, Square, then

> she had him run up and down the hall way and gave him a bunch of candy

> for doing so, She then looks at me and says she doesn't see anything

> " wrong " but writes that he needs to have a OT Evaluation, Physical

> Therapy Eval. And a Speech Eval. She also wanted an EEG and MRI and

> that was it, we went back after the EEG and MRI and she said all

> looked Fine, not to come back unless he forgets anything again.

>

> The OT therapist said he was about 18 months behind, and she noticed

> memory problems but she would work on that with him, and the Physical

> therapist said that the OT would go over most things she would and

> better to let the OT cover that, The speech therapist appt was so

> close to me putting him into Kindergarten so I called the school and

> well he will be Evaluated this August.

>

> Everything I have read points to Autism!!! Why does no one see what

I see?

>

> Why do I feel like the only one out? I have been asked so many rude

> things and I have no clue what else to do, I have been asked why I am

> doctor shopping, I have been asked why I want to get this diagnosis,

> why do I want to keep looking for something that is not there!

>

> I want someone to understand my concerns and to help me get the help

> my son needs!!

>

> He can say his alphabet now he can count to 10 on good days, he knows

> his colors! He still hops on his tip toes; He has different things he

> has gone through, for months he would lick his hands palms to the tips

> of his fingers drool running down his arms, he would do this so much!

> He would have a toy hanging out of his mouth most of the day, he would

> suck on his collar of his shirt all day, and today he has started to

> clap for no reason other to just clap! He hates loud noises, Last week

> he started to get mad and his new thing to say is he is going to hurt

> himself so he climbs up on his bed and jumps off to try and get hurt

> (is this normal?) He still whines for hours during the day I have no

> clue why he is whining at all! He is obsessed over animals what type

> there habitat and what they eat.

>

> He does so many other little things but right now at 1am I can't think

> of them, if any one can help me please do!

>

> Thank you

>

> Jess

>

[Guest guest]

I think it depends upon where you live in Texas. We live in Austin, TX and we haven't had problems getting the school to acknowledge there was a problem and get him tested. He's been tested off and on since Kindergarten (he's entering 7th grade in a few weeks) and we've received good evaluations (2 that were excellent.) Now I've heard other people say there are problems with Texas and it's harder to get help here so I'm not discounting that at all, I just think it depends on where you live.

( ) Re: My Letter

Jess, I'm so sad you're going through this and nobody is taking you seriously. Sometimes this seems to be state dependent. I know in Texas people have a terrible time getting anyone to make a diagnosis while in land and New Hampshire the tendency is to diagnose early and change the diagnosis to something less severe if it turns out not to be autism. My son was diagnoed at age 3.5 with less severe issues than your son has but people in Texas can't get a diagnosis at all sometimes. We moved to New Hampshire quite recently and there are some amazing doctors here including a developmental pediatrician who has worked with a Dr. Volkmar (sp?) at Yale who is an expert on Asperger Syndrome. People don't have trouble getting diagnoses here and school value what doctors and parents say. In Texas the schools ignore the doctors and parents and would rather hire lawyers to fight parents than to provide what

is needed.My son never lost any skills, was way ahead on letters, numbers, colors and shapes. He knew what dodecahedrons and parallel pipeds were. I'm still not entirely sure. The first is some sort of 12 sided figure and the parallel piped is a 3D thing. He could read literally by his second birthday. He didn't communicate with language a whole lot, though, did some repetititve things, had lots of meltdowns in social situations and chewed like crazy. He's a little behind in gross motor skills. Definitely pretty mildly affected and yet in land we had this diagnosis in a really short time and had services from the school district instantly. It makes me angry that there is so much variety between states. I hope I never have to move again. New Hampshire is fantastic.My daughter who does not have autism, but has lots of anxiety and some OCD has a lot of trouble with choking on drinks but

never foods. Did you ever find out what caused it?Miriam>> This is the Letter I wrote and Brought to the School When I enrolled> into Kindy.> > I am lost!> > My Son is almost 5 June 30th, I have knows something was off when> he was a little over 2 years old and he forgot all his colors,> numbers, and alphabet, he hopped all over the place on his tiptoes and> we nicknamed him tigger, I took him to his pediatrician and she told> me that it was ok and that that's common and he will remember them.> > Then 's was 3 and his yearly came around and he still didn't know> them and he has always had issues

drinking and choking on what ever he> drinks, no matter what type of cup he chokes on it, I also told her> that he was 3 now and cant count or say his alphabet or name any> colors correctly, he still could not hold silverware to feed himself> even though he tried and tried, his whining was going way beyond> normal to me, I have 2 older children he would whine about 7 hours a> day, he would fall all the time, He still spaces out, The ped told me> yet again that he was just a clumsy 3 year old and would grow out of> it all.> > Then 's 4 year old yearly came around and he was chewing on his> stuffed animal rolling around the floor saying "googoogaagaa" then it> wasn't normal!!!! He was still choking on anything he was drinking,> still couldn't hold a fork or a spoon to eat, he could name colors and> say some of the alphabet and he could

count to 6, But his whining was> still a lot! his fits were lasting hours his new thing was everything> went into his mouth, so bad I had to make sure nothing small was on> the floor or he would eat it or chew on it. She told me that a lot of> this sounded like Aspbergers and she wanted me to take him to the> Child Study Center in Dallas.> > Well we get to his appt and the last talks to me and I told her> everything! She talks to and I have to copy what he says so she> can understand him, she had him look at 7 pictures and he pointed to> the others and then she had him Draw a circle, triangle, Square, then> she had him run up and down the hall way and gave him a bunch of candy> for doing so, She then looks at me and says she doesn't see anything> "wrong" but writes that he needs to have a OT Evaluation, Physical> Therapy Eval. And a

Speech Eval. She also wanted an EEG and MRI and> that was it, we went back after the EEG and MRI and she said all> looked Fine, not to come back unless he forgets anything again.> > The OT therapist said he was about 18 months behind, and she noticed> memory problems but she would work on that with him, and the Physical> therapist said that the OT would go over most things she would and> better to let the OT cover that, The speech therapist appt was so> close to me putting him into Kindergarten so I called the school and> well he will be Evaluated this August.> > Everything I have read points to Autism!!! Why does no one see what I see?> > Why do I feel like the only one out? I have been asked so many rude> things and I have no clue what else to do, I have been asked why I am> doctor shopping, I have been asked why I want to get this

diagnosis,> why do I want to keep looking for something that is not there!> > I want someone to understand my concerns and to help me get the help> my son needs!!> > > He can say his alphabet now he can count to 10 on good days, he knows> his colors! He still hops on his tip toes; He has different things he> has gone through, for months he would lick his hands palms to the tips> of his fingers drool running down his arms, he would do this so much!> He would have a toy hanging out of his mouth most of the day, he would> suck on his collar of his shirt all day, and today he has started to> clap for no reason other to just clap! He hates loud noises, Last week> he started to get mad and his new thing to say is he is going to hurt> himself so he climbs up on his bed and jumps off to try and get hurt> (is this normal?)

He still whines for hours during the day I have no> clue why he is whining at all! He is obsessed over animals what type> there habitat and what they eat.> > He does so many other little things but right now at 1am I can't think> of them, if any one can help me please do!> > Thank you> > Jess>

[Guest guest]

Yes, I agree with this, though I think it's even more local than just

city to city. It's district to district and individual school to

individual school. I have a friend who moved from Autin to Plano to

get her son into the school my son was in. She had an extremely bad

time in Austin and is having a much better time in Plano in the one

and ONLY school in Plano that could help her child. If she'd moved

to another neighborhood there might have been no chance of getting

him into the school we were in.

We moved to TX when was almost 7 years old. He started school

in January 2004 when he was in first grade. He went to a terrible

school in our neighborhood which is part of plano ISD schools called

Boggess Elementary. It has since been nicknamed Bogus Elementary.

Once we drove by and my son saw the sign, " Welcome to Boggess " and he

said " They pretend to be nice! " He was only about 8 years old by

that time but he really had them pegged after we got him to a better

school.

My attitude of letting him advocate for himself in the only way he

knew how really made a difference. I refused to let them keep him

in " special programs " which is kind of like a lock down school for

kids who bring drugs and weapons to school once I figured out what it

was. My son pushed a chair into the back of his teacher's legs. He

was 7. At this " special programs " school he was restrained on the

floor when he forgot to raise his hand to go to the restroom. He

still doesn't think to tell anyone he's going to the restroom, he

just can't fathom needing to do it. He's improved at school, is much

better at asking. If he's with me at the mall I think he really

believes there's a connection between our brains that leads me to

him. Not quite, though I'm exceptionally good at predicting his

behavior. If he walks away from me at the mall it's usually for the

bathroom, water fountain or gamestop. Really there isn't anything

else he does and most of the time he asks if we can go to gamestop.

It's those bodily functions that he can't remember to tell me about.

LOL.

In Plano ISD there's the one school that is great and then the rest

it's really just a crapshoot depending on the current principal (lots

of turnover lately) and the staff involved. Texas just isn't all

that consistent and I thought what I had in TX was fantastic until I

got to New Hampshire which has standards higher than the federal

gov't and IDEA. It's not perfect here and some schools and districts

are better than others but even the worst seems to be better than the

best was in TX that I encountered.

I worked with a lot of parents in TX because I started a support

group in my area. It was all Dallas suburbs so I don't know how it

would be in Austin though I know the politics in Austin is very

different from all the rest of TX.

Around Dallas, Plano is supposed to be the best district however

there are good and bad schools within that district. Dallas ISD is

supposedly very good. Crandall is just the WORST I've seen. Frisco

isn't great though the wonderful person who started the classroom

attended in Plano has taken a position on Frisco. isn't

terribly good. Carrollton is very good. Again you have to check out

the individual schools.

Here's what I get in New Hampshire. A 1:1 support person. Home base

in the " resource room " where keeps his backpack so he doesn't

have to fight the locker area rush insanity. The resource teacher

suggested that instead of foreign language and " enrichment "

should go to resource at the end of the day to catch up on homework

and get his stuff ready for going home and cool down. Foreign

language was really stressing him so they suggested just taking him

out and if we want to help him learn a foreign language we can do it

differently. Enrichment is supposed to be kind of a fun learning

thing that has nothing to do with current classwork. Kind of a waste

of time if you ask me. Not that they shouldn't have fun, but I think

perhaps more recess would make more sense.

My son is in the " intermediate school " . It's not elementary and not

middle school. There are 5th and 6th graders there. gets

breaks. He works with the guidance counselor regularly and then

there is OT and ST. can use a computer or alphasmart or even a

tape recorder in completing assignments. He gets extra time to do

assignments. If we need something the school jumps to it. Then

there's extended school year for which never qualified in TX.

The district paid for to do 4 weeks of day camp at a typical

camp with a 1:1 paraprofessional paid for by the school. It was a

boys and girls club thing.

A professional staff member from the school district was on sight to

help with the special needs kids at all times. He was fantastic at

communicating with me. We had some rough times and though the para

was unfamiliar with asperger syndrome she was flexible and able to

learn quickly. She did a fantastic job. had a great, amazing

week during his last week of camp. We all worked to fine tune it to

get the most positive experience with the most social skill work. It

was FUN.

One day I forgot to mention to the para that I'd be picking up

at 1:00. We shortened his day from 9:00 - 2:30 down to 9:30 to 1:00

since was getting sort of irritable by 1:00 and was refusing to

eat lunch at camp. Anyway one day I forgot to mention I was picking

him up at 1. It was an unwritten agreement but since I didn't

mention it to anyone, nobody was 100% sure what to tell when he

asked. His para said, " I don't know, maybe we should ask Mr. Quinney

(district person) to call your mom. So he went to Mr. Quinney and

said, " Can you please call my mom to find out if she's picking me up

at 1:00. " He was appropriate so Mr. Quinney and the para both made

sure he knew he'd done a GREAT job of using words. Then Mr. Quinney

called me immediately and got right back to with the

information. It's these kinds of amazing actions combined that made

the experience fantastic. The district buys up a bunch of slots for

special needs kids and offers them to parents. I didn't pay a single

penny. I had to buy a plain white t-shirt to tie dye one day.

That's IT for the whole camp experience. I'm sure that was THOUSANDS

of dollars worth of camp. Other parents of special needs kids here

told me how fantastic this camp is. We WILL do it again next year

without fail. The para plans to come back too, so we're hoping

she'll get to work with again.

The school takes all of my suggestions seriously. We are a team.

It's a beautiful thing.

Miriam

> >

> > This is the Letter I wrote and Brought to the School When I

enrolled

> > into Kindy.

> >

> > I am lost!

> >

> > My Son is almost 5 June 30th, I have knows something was off

> when

> > he was a little over 2 years old and he forgot all his colors,

> > numbers, and alphabet, he hopped all over the place on his

tiptoes

> and

> > we nicknamed him tigger, I took him to his pediatrician and she

told

> > me that it was ok and that that's common and he will remember

them.

> >

> > Then 's was 3 and his yearly came around and he still didn't

> know

> > them and he has always had issues drinking and choking on what

ever

> he

> > drinks, no matter what type of cup he chokes on it, I also told

her

> > that he was 3 now and cant count or say his alphabet or name any

> > colors correctly, he still could not hold silverware to feed

himself

> > even though he tried and tried, his whining was going way beyond

> > normal to me, I have 2 older children he would whine about 7

hours a

> > day, he would fall all the time, He still spaces out, The ped

told

> me

> > yet again that he was just a clumsy 3 year old and would grow out

of

> > it all.

> >

> > Then 's 4 year old yearly came around and he was chewing on

his

> > stuffed animal rolling around the floor saying " googoogaagaa "

then

> it

> > wasn't normal!!!! He was still choking on anything he was

drinking,

> > still couldn't hold a fork or a spoon to eat, he could name

colors

> and

> > say some of the alphabet and he could count to 6, But his whining

> was

> > still a lot! his fits were lasting hours his new thing was

> everything

> > went into his mouth, so bad I had to make sure nothing small was

on

> > the floor or he would eat it or chew on it. She told me that a

lot

> of

> > this sounded like Aspbergers and she wanted me to take him to the

> > Child Study Center in Dallas.

> >

> > Well we get to his appt and the last talks to me and I told her

> > everything! She talks to and I have to copy what he says so

she

> > can understand him, she had him look at 7 pictures and he pointed

to

> > the others and then she had him Draw a circle, triangle, Square,

> then

> > she had him run up and down the hall way and gave him a bunch of

> candy

> > for doing so, She then looks at me and says she doesn't see

anything

> > " wrong " but writes that he needs to have a OT Evaluation, Physical

> > Therapy Eval. And a Speech Eval. She also wanted an EEG and MRI

and

> > that was it, we went back after the EEG and MRI and she said all

> > looked Fine, not to come back unless he forgets anything again.

> >

> > The OT therapist said he was about 18 months behind, and she

noticed

> > memory problems but she would work on that with him, and the

> Physical

> > therapist said that the OT would go over most things she would and

> > better to let the OT cover that, The speech therapist appt was so

> > close to me putting him into Kindergarten so I called the school

and

> > well he will be Evaluated this August.

> >

> > Everything I have read points to Autism!!! Why does no one see

what

> I see?

> >

> > Why do I feel like the only one out? I have been asked so many

rude

> > things and I have no clue what else to do, I have been asked why

I

> am

> > doctor shopping, I have been asked why I want to get this

diagnosis,

> > why do I want to keep looking for something that is not there!

> >

> > I want someone to understand my concerns and to help me get the

help

> > my son needs!!

> >

> >

> > He can say his alphabet now he can count to 10 on good days, he

> knows

> > his colors! He still hops on his tip toes; He has different

things

> he

> > has gone through, for months he would lick his hands palms to the

> tips

> > of his fingers drool running down his arms, he would do this so

> much!

> > He would have a toy hanging out of his mouth most of the day, he

> would

> > suck on his collar of his shirt all day, and today he has started

to

> > clap for no reason other to just clap! He hates loud noises, Last

> week

> > he started to get mad and his new thing to say is he is going to

> hurt

> > himself so he climbs up on his bed and jumps off to try and get

hurt

> > (is this normal?) He still whines for hours during the day I have

no

> > clue why he is whining at all! He is obsessed over animals what

type

> > there habitat and what they eat.

> >

> > He does so many other little things but right now at 1am I can't

> think

> > of them, if any one can help me please do!

> >

> > Thank you

> >

> > Jess

> >

>