Frustration

[Guest guest]

,

Good for you for seeking support, when you've had a rough time. And

good for you for sticking to your guns. Oh the nightmare of public

scrutiny! Things can get better!

It IS hard when we hope and dream that things will be a certain way,

and of course, they aren't. Honestly, though, that's not just with

ASD kids. Even before I had a child, I've imagined many things to be

a certain way and the reality is usually different than my

expectations. I try to remember that is not just ASD, that is LIFE.

From personal experience, dietary changes were so very remarkable for

us. It is intimidating at first. It helps to have support and it

takes research and time. We were fortunate in that we did not have to

go GFCF, we tested for food issues, but for us it was soy, which

turned out to be even more difficult than I expected.

If you suspect food allergies/sensitivities, you can always try

digestive enzymes. For us getting out the sugar, increasing protein,

avoiding soy (we don't have to eliminate anymore), and digestive

enzymes had HUGE MAJOR behavioral and sensory improvements - by the

end of the first week. For the first time in over a year my kid

dressed himself, there were no meltdowns and there were no issues

with tags, seams, etc. I am not exaggerating when I say it completely

changed our lives.

To help eliminate processed sugar in a way that was easiest for my

son, here is what we did. First off, even at the age of 4 we

discussed nutrition and what a body needs to grow and what muscles

are made of, and bone, etc. (for this it helps that I use anatomy and

physiology in my profession). That helped with his " buying in " to it.

What little boy doesn't want to be strong?

Second, I would write down what he ate, and then ask him how he felt,

how difficult was it for him to make good choices, did his tummy

hurt, or was his clothing bothering him? And he saw the connections.

Third, we switched to raw honey and organic agave nectar for

sweeteners. Raw honey has trace minerals and is not such a yeast

feeder, and agave nectar doesn't spike your blood sugar as bad as

table sugar, it has a much lower glycemic index, and dissolves easily

in liquids - even cold liquid. But they both taste sweet and that is

what the kids are seeking. Then later, we worked on cutting back the

amounts.

We made small changes - yogurt parfaits - in fancy glasses with

layers of yogurt, fresh fruit, and a sprinkle of chopped nuts and a

few allergen free chocolate chips- that was a real " treat " he could

get excited about! Homemade popsicles- vanilla yogurt with orange

juice for example. There are groups and blogs devoted to this stuff.

Hands down, the BEST book I used as guidance to get my kid and family

to lower sugar consumption, slowly and gradually and with their

cooperation was " Little Sugar Addicts " by Dr. Kathleen DesMaison. She

also wrote a book called " Potatoes Not Prozac " for adults and they

both give excellent explanations of how the fuel you put into your

body (which all break down in chemical reactions in your body) become

sources of elements that cause chemical reactions in your brain,

which affect mood, behavior, etc. What you put in your body is a huge

factor in how one feels/behaves. She gives detailed easy to follow

directions that over time - this is not a quick fix- make it simple

to realistically lower the sugar in your family's diet.

Follow your instincts - you know your child best, and if it isn't

harmful, give it a try and see if you feel there is benefit.

Good luck to you, and hang in there!

>

> Everyone,

>

> Thank you-thank you-thank you. I really do appreciate your insights

> and support. Deep inside, I am confident that I made the right

> decision. Yet with some social anxiety issues of my own, it is

really

> hard to keep perspective when these outburst happen in public.

>

> For those who are wondering, he is 8 years old in 3rd grade and is

> lanky but strong. I began to suspect that he was ASD when he was 3.

> He would play " parking lot " where he would take every matchbox car

in

> the house and line them up in rows. If they were disturbed, he

would

> " lose it. " He has always had a fascination with maps/globes and

enjoys

> just looking at them and making up stories. School has been a

> challenge--it is a great district if your kid falls on the curve,

but

> is difficult to navigate when you kid is different. My favorite

> event--as I digress--was in first grade, the teacher claimed that he

> " got by " on prior knowledge--you know, because a 6/7 y.o. has the

> conscious ability to slack his way through 1st grade. A colleague

of

> mine pointed out something that I think about every so often--We

> taught him more at home in the 2.5 hours after work than she did all

> day long--what does that say about one of the area's top school

> districts? Troubling isn't it?

>

> Looking at this in retrospect, when we have these public meltdowns,

> the worse part is the ripple effect through the family unit. I think

> in part it is caused by my own disappointment and that of my

husband's

> when things go horridly awry when our only intention was to create a

> " special family time. " I tell our boy often, not to set up

> expectations that things will go in a certain way and yet, I have a

> tendency to do the same thing-- " write internal scripts " if you

will.

> Another interesting aspect to this event and as with those in the

> past has been the child's uncanny ability to move from hysterical to

> calm in a matter of a couple moments. Some call it resilience, but

> for me it has always been and continues to be somewhat unsettling.

Do

> others experience this Jekyll/Hyde swing with their kids?

>

> , you mention food, and this is something that I must address

> more often. I don't get hungry like my husband and son do and so it

> is not front of mind to keep snacks etc at hand during outings. As

> far as diet goes, I am sure everyone suffers from the finicky eater

> issues associated with ASD. One thing that we are certain of is the

> need to get ours off of processed sugar. We have already moved to

> hormone free meat, which has reverse some early onset puberty

(mainly

> b.o. and a little acne). So I know that diet definitely has an

> impact. I am not ready to go GFCF as I want to try this first--

along

> with food dyes. My father in law is celiac, so this may be another

> avenue to proceed at a later date, but we need to do this slowly and

> measured.

>

> My question for the group is how do we go about eliminating

processed

> sugar (High fructose corn syrup, splenda, for example) from the diet

> in a way that does not throw his sense of order off? I would

> appreciate any suggestions in this area..

>

> Again, everyone, thank you so much for your support and

suggestions.

> I appreciate you listening...

>

> Best

>

>

>

[Guest guest]

Hi ,Please, please, let the LAST thing on your mind be what complete strangers think! They do NOT walk in your shoes and have no idea what you go through whatsoever. Your hands are full enough. Each day is a new day and a new chance to try your best; some people have no idea how blessed they are to have "neurotypical" children. I'm sure these staring folks must also have had moments of public embarrassment at one time or another. Who cares?? What I'm trying to say is, just hang in there and don't worry about these strangers who you will never see again anyway. Just focus on your own family. Am sending hugs and prayers your way.Penny

[Guest guest]

Hang in there , you are doing just fine! Many people will not stop to tell you that you are doing great because they don't want to make it worse. I'm glad someone did! The more you stick to your limits, the better it will be in the long term. For now, I would just hang in there and keep at it. I have had to drag kids out of public places while they were screaming many times in the past. I know how awful it feels. I wish I had a magic formula!! But the good thing is, I'm still here and I'm not insane and the kids are in one piece. <g>

I remember one time we had our car break down on a cold winter's trip to my parents house for Xmas. We were towed to the local Sears repair shop which was hooked onto a mall. I walked with the kids around the mall waiting for my parents to drive up to get us. We were all tired and stressed. My ds was probably 3 or 4 yo at the time, did not speak yet and had headbanging tantrums. So I tried pulling him out of this toy store as I saw him winding up but I was too late. He starts screaming and headbanging right there in the toy store, in the mall. People stared. Ugh. I wanted to become invisible. But no such luck! Instead, I kept pulling him and dragging him to find a quiet spot - a door somewhere to the outside so we could scream in private. <g> Well, all of the sudden I rounded the corner and saw a door! My escape! As I hurriedly dragged my darling (he was kicking, screaming and not able to be carried so I was literally dragging him!) a lady grabbed my arm. She told me that it was ok, kids have tantrums in public all the time and that I should not use violence to solve the problem. LOL! I wasn't planning to beat him - I just wanted to get him out of there and into some cold air to cool off and calm down. But later I realized I probably looked like I wanted to beat him! LOL.

Sad to say, this was not an isolated incident as we regularily had to leave stores for a long while. Now he is 19 yo and I can take him out in public, lol. No more tantrums. So there is a light somewhere down the road...just keep going forward.

RoxannaYou're UniqueJust like everyone else...

( ) Frustration

Hi all. This is the first time I have posted. But I am so defeatedright now. Just when you think you have made two steps forward, youtake three back. Our son is a bright and intelligent boy, but geezcan he be disagreeable! We were the proud parents of a major meltdown at the Science Centeryesterday, had to carry him out of the building, out to the car. It isjust so mortifying in public you know...the stares, theexplanations..I just hate it all. It makes me so sad.We set the boundaries--he pushed, we asked him to chose and thedefiance started. He responds--I am getting it all. We try quietreasoning, we remind him of the limits set, he doesn't care. He getsthis look on his face as if his personality changes right in front ofour eyes. Finally, have what seemed like an eternity of this, I putthe hammer down. Inform him he will get nothing because he can'tfollow the agreed upon guidelines and the meltdown is in full tiltwhirlie at that point. Wrenching the items out of his hands, I pick him up, offeringapologies on the way out. The one redeeming moment is when I havepulled the car around and a random parent comes to me andcongratulates us for not caving into his fit. I thank him for theencouragement and wish him a good afternoon.How do you all recover from these incidents? How do you handle thepower struggle in public? How do you move on and still get out inpublic? Any suggestions, guidance would be appreciated. As myhusband pointed out--it's hard when it is a support group of two. Weare so tired of struggling.... We start TSS on Thursday--took all summer to secure it, do we relatethis to her and the BSC? God, I just don't know what to do.Thanks for listening.

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.6.14/1646 - Release Date: 9/1/2008 6:03 PM

[Guest guest]

Get a letter from the doctor who diagnosed him. Also remind them they get extra money for every Special Ed child they have. Also contact the Alabama Department of Education: Special Ed Department @ 334-242-8114 and here is the website http://www.alsde.edu/html/sections/section_detail.asp?section=65 & footer=sections. I do not know the specific laws/rules in Alabama but I do know that you can request a Due Process Hearing and to do that you will need to use this documant ftp://ftp.alsde.edu/documents/65/Due%20Process%20Hearing%20Request%20Form.pdf. Do not give up they are required by FEDERAL LAWS to

provide FREE AND APPROPRIATE EDUCATION!

If you have any more questions send me a email armymansfieldbrat@... if I don't know the answer I will find it out for you (mom my and aunt are both educational/buissness attorney's) so it won't take that long.

( ) frustration

I'm wondering if any of you guys have some advice for me. We live inAuburn Alabama, and my son was diagnosed with Asperger's over a yearago and last school year after arguing with the school, they finallytested him to see about getting an IEP plan.To my SHOCK,not only didthey come back and say he can't get one..because he has to be failingand he makes A's and B's, but that according to them, he doesn't evenhave Asperger's. Therefore, he is also not eligible for a 504 plan. Weare devastated. He only has a mild form of Asperger's, but he has itnone the less..and it affects him socially and emotionally at schoolevery day. The psychologist says he has it..and the tests we took(me,my husband, and my sons father) all showed he had it...but theteachers they had took a test showed that he didn't..and that's theresults they are going by. Any thoughts on what I can do? I keephearing from people that I just

fight fight fight..but it seems like alosing battle :(thanksjessica

[Guest guest]

> The psychologist says he has it..and the tests we took

> (me,my husband, and my sons father) all showed he had it...but the

> teachers they had took a test showed that he didn't..and that's the

> results they are going by. Any thoughts on what I can do?

SO you have the dr that diagnosed him give you a report and then you

give it to the school and they will have to give him IEP.

Also did the school just test your son or did you request that they do

the testing? I think if the school just went ahead and tested him

that they were not allowed to that.

I would hope that others on this list would correct me on all of this

if I am wrong so that I can get it right in the future.

Marj

[Guest guest]

OK Vicki!!!

Kings have magical powers....usuallys the Queens are better, but in this

case it'll do! Muster up that energy!! Think of the smiling faces....is this

working yet?

I have sort of a similar situation...well, not a work thing....I just read

my friend the riot act for not going to the gym with me for weeks, because

he's been in this rotten mood, etc...and that the gym will make him feel better

etc....well, yesterday, my bursitis started acting up again..I had no

intention of going until next week.....anyway, he called me this morning and

said,

OK, we start again today at 3...um....well, OK, see you at 3!!!!

So, It's time to pull up the big girl undies or however that crazy saying

goes and go. Trust me Vicki, I feel your pain, been there done that....don't

wanna go...have to go. I'm visualizing us sitting in the massage chairs

indicating the end of the work out session....ahhhhhhhhhhhhhhhhhhhhh.

has this helped? are you laughing yet? i'm sorry if you want to beat me

with a stick....but you have to come to mass to catch me first. LOL

Heidi ~

In a message dated 10/23/2008 1:43:01 P.M. Eastern Daylight Time,

gramvick@... writes:

Group,

Just me again venting out my frustrations with this disease. I woke this

morning in an awful flare. Have taken my meds lending a small amount of relief

however my day is planned out for me, and I am wondering just how to get the

strength to get through.

I work tonite, which wouldn't be so bad as being the boss I can usually go

into my office and hide for a time, however tonite I have a birthday party

scheduled, which on any other night would mean dressing up as the King,

interacting with the kids, serving them etc. I could easily pass this on to an

employee, if it were not that my playland is under construction so tonite the

King

has to deliver the food to these people and do the party there.

As you can guess this needs to be a manager of some sort. One of my

assistants has been at the store since 5 am so asking her is out of the

question, and

the others are not answering there phones. I am sure because they all have

caller ID and think I am calling them into work. LOL.

I am asking all of you to lend me some strength to get through this so the

kids have a good time. It really sucks not being able to do the things we once

did with so much ease.

Vicki

Iowa

[Non-text portions of this message have been removed]

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

OH no! I'm not telling! Running...or trying to.

glad to help...LOL....but still running....hehehhee

on my way to the gym now so you and the list are safe for a bit...

let us know how you do tonight.

Heidi....not telling where!

In a message dated 10/23/2008 2:08:41 P.M. Eastern Daylight Time,

gramvick@... writes:

Thanks Heidi,

By the way Heidi is my oldest daughters name.

Thanks so much for the smiles. I know I will muster up some of that energy

somewhere. At least I will not be at the gym with you. Not that I don't like

you or gyms but that sounds even more frustrating and painful today. LOL

We will both get through it, you have already my day a little brighter by

bringing a smile and laughter into it. Thanks

Vicki

Iowa

{By the way how far is Ma. I may have to come there to beat you with a stick

if I fall on my face tonite Tee Hee}

[Non-text portions of this message have been removed]

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

Can you find 20 minutes to clear your mind, meditate listen to soft music?

May help rejuvenate you.  Good luck.

Raniolo

From: Vicki <gramvick@...>

Subject: [ ] Frustration

Date: Thursday, October 23, 2008, 1:41 PM

Group,

Just me again venting out my frustrations with this disease. I woke this morning

in an awful flare. Have taken my meds lending a small amount of relief however

my day is planned out for me, and I am wondering just how to get the strength to

get through.

I work tonite, which wouldn't be so bad as being the boss I can usually go into

my office and hide for a time, however tonite I have a birthday party scheduled,

which on any other night would mean dressing up as the King, interacting with

the kids, serving them etc. I could easily pass this on to an employee, if it

were not that my playland is under construction so tonite the King has to

deliver the food to these people and do the party there.

As you can guess this needs to be a manager of some sort. One of my assistants

has been at the store since 5 am so asking her is out of the question, and the

others are not answering there phones. I am sure because they all have caller ID

and think I am calling them into work. LOL.

I am asking all of you to lend me some strength to get through this so the kids

have a good time. It really sucks not being able to do the things we once did

with so much ease.

Vicki

Iowa

[Guest guest]

Thanks Heidi,

By the way Heidi is my oldest daughters name.

Thanks so much for the smiles. I know I will muster up some of that energy

somewhere. At least I will not be at the gym with you. Not that I don't like you

or gyms but that sounds even more frustrating and painful today. LOL

We will both get through it, you have already my day a little brighter by

bringing a smile and laughter into it. Thanks

Vicki

Iowa

{By the way how far is Ma. I may have to come there to beat you with a stick if

I fall on my face tonite Tee Hee}

[Guest guest]

Thanks ,

Going to go soak in a tub full of hot water and Calgon before I leave for the

day. I love the Tahitian Beauty one, is so relaxing it may help some. Think I

will spray the body mist all over too. That way I can keep visualizing being

back home relaxing.

I used to read to relax but I cannot even do that any longer as my eye sight has

diminished so much. Am getting new glasses every six months or so.

I hope your day is going well.

Vicki

Iowa

[Guest guest]

Vicki,

I'm late posting, I hope things went OK for you. Try to rest when you

can, I know its not easy when you have to work. Its Friday, I hope your

able to relax this weekend.

Take care, Tawny

>

> Group,

> Just me again venting out my frustrations with this disease. I woke

this morning in an awful flare. Have taken my meds lending a small

amount of relief however my day is planned out for me, and I am

wondering just how to get the strength to get through.

>

> I work tonite, which wouldn't be so bad as being the boss I can

usually go into my office and hide for a time, however tonite I have a

birthday party scheduled, which on any other night would mean dressing

up as the King, interacting with the kids, serving them etc. I could

easily pass this on to an employee, if it were not that my playland is

under construction so tonite the King has to deliver the food to these

people and do the party there.

>

> As you can guess this needs to be a manager of some sort. One of my

assistants has been at the store since 5 am so asking her is out of the

question, and the others are not answering there phones. I am sure

because they all have caller ID and think I am calling them into work.

LOL.

>

> I am asking all of you to lend me some strength to get through this so

the kids have a good time. It really sucks not being able to do the

things we once did with so much ease.

>

> Vicki

> Iowa

>

>

[Guest guest]

Vicki,

I know this is late, but I hope it wasn't a horrible night and you

are getting some much needed rest.

Shirley

>

> Group,

> Just me again venting out my frustrations with this disease. I

woke this morning in an awful flare. Have taken my meds lending a

small amount of relief however my day is planned out for me, and I

am wondering just how to get the strength to get through.

>

> I work tonite, which wouldn't be so bad as being the boss I can

usually go into my office and hide for a time, however tonite I have

a birthday party scheduled, which on any other night would mean

dressing up as the King, interacting with the kids, serving them

etc. I could easily pass this on to an employee, if it were not

that my playland is under construction so tonite the King has to

deliver the food to these people and do the party there.

>

> As you can guess this needs to be a manager of some sort. One of

my assistants has been at the store since 5 am so asking her is out

of the question, and the others are not answering there phones. I am

sure because they all have caller ID and think I am calling them

into work. LOL.

>

> I am asking all of you to lend me some strength to get through

this so the kids have a good time. It really sucks not being able to

do the things we once did with so much ease.

>

> Vicki

> Iowa

>

>

[Guest guest]

you may find this article helpful:

Transition to Middle School, IRCA Article

In a message dated 1/26/2009 5:09:36 P.M. Eastern Standard Time, baneline1@... writes:

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated because either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

I do understand. My son will start the 6th grade next year. I seen how immature he is about life in general. Still believes in Sant and Toothfairy. They are going to eat him alive. He starts chanting about stuff in his head that has nothing to do with what is being discussed. Teachers all want them to be self-sufficient and organized. He forgets where he put his shoes five minutes ago.

We just need to find our own country and go live there. We will finally have parents and teachers that understand that it is all about what you said and not about how you said it.

Ide

From: Vickie Boehnlein <baneline1@...> Sent: Monday, January 26, 2009 4:09:01 PMSubject: ( ) Frustration

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated because

either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie

[Guest guest]

Whoosh...at times I have the same kind of days. I have a middle school son with AS. The unknown is the hardest and the beginning of the school year can be quite insane. It takes my guy a few months to adjust to the change in schedule and the expectations of the teachers, but I keep close tabs on what is what and email the teachers sometimes daily. Keep your spirits up and thanks for sharing your story, it is what keeps me going, knowing that I'm not alone in the frustrations.

On Mon, Jan 26, 2009 at 5:09 PM, Vickie Boehnlein <baneline1@...> wrote:

So, this is another one of those days where I feel alone in the world

because people just don't understand what it is like to have a AS

child. I am gearing up for my son's annual IEP meeting. He will be

entering middle school next year (5th grade) and so I have to think

about how that will impact him. Of course, I have to do this now

because it will be half a school year into before his next IEP

meeting.

I am talking to a friend who has older NT kids that have been through

middle school and explaining the kind of things I want to have happen

and she is talking about how the teachers expect the kids to need

help getting organized and will work with them. I was trying to

explain how so many of the things that they need to do is just going

to be beyond his abilites and she is offering " helpful " ideas on how

I can work on things at home.

I guess that I am just feeling very frustrated because either I am

around people who, good friend or not, will never understand or I am

being defeatist about my son and giving up without trying. I don't

want to " give in " to the condition and give up on him but I also

don't want to make him feel like a failure his whole life either

because he does have limitations. I'm not sure about the balance I

need to find here.

Thanks for listening. Its nice to know that somewhere out in the

world are people who do understand.

Vickie

[Guest guest]

>

> I do understand.� My son will start the 6th grade next year.��

FWIW, our jr high has been tons better than the elementary years were.

Grades 4-6 were the worst. Honestly, all the teachers were

high-school-teacher-wanna-be's.

Ruth

[Guest guest]

I feel so close to you right now, Vickie . Totally understand.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: Vickie Boehnlein <baneline1@...> Sent: Monday, January 26, 2009 4:09:01 PMSubject: ( ) Frustration

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated because

either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie

[Guest guest]

Oh...Vickie...we all feel the same...we've either been there done that or just going to do it or will be doing it. That is what is so great about this site....everyone is so helpful. My son is now in 7th. From your post...it sounds like your son is going into 5th grade. Not to scare you but for some reason or another...school tend to make 5th grade very difficult. They are Preparing our kids for high school (that is what I was told). Yes, they do want them to be self-sufficient and organized and all the jazz. No, they don't get it....it is beyond their comprehension that our kids just can't do it....it is not because they are messy or lazy...it is because of the way their brains are wired....They kept tell me in 5th grade that I had to take away the supports ...not add to them. I understand where they were coming

from...that is okay for Nts' but not our kids....it takes them longer and maybe they won't ever be organized. They need constant reminders and hints and help....but isn't that what Special Ed. is all about....

So, just put things into his IEP that they have to help orgainze him...they need to check his backback at the end of the day to make sure he has what he needs, they need to check his planner...he may need extra time for test and quizes, if homework is too much they may be able to reduce the number of problems....they may need to use visual aids...they may need to put up a schedule for him or put one in his notebook...just make sure you put it in his IEP....it then becomes their responsibility and you can hold them accountable if it is not done.

I know...I am about to pull my hair out many a night...and alot just because of my son's forgetfulness and his fustration with homework and his anger issues.

But, take one step at a time....and remember you can always call for an IEP meeting ANYTiME...you don't have to wait till the middle of next year. If you have concerns in the beginning of the year....call for a meeting.

hang in there....cause I am hanging in too!

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated

because either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie

[Guest guest]

I hear ya, Vickie.

You want the dx. You want them to have limits and help for things that are overwhelming and for teachers / friends / people to understand. BUT,,,,you also want them to learn how to adapt and HOW do you do that if they are always protected and given these helps.

Ugh.....

It's hard.

Robin

From: Vickie Boehnlein <baneline1@...>Subject: ( ) Frustration Date: Monday, January 26, 2009, 4:09 PM

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated

because either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie

[Guest guest]

That's it in a nutshell, Robin!

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: and/or Robin Lemke <jrisjs@...> Sent: Monday, January 26, 2009 9:35:07 PMSubject: Re: ( ) Frustration

I hear ya, Vickie.

You want the dx. You want them to have limits and help for things that are overwhelming and for teachers / friends / people to understand. BUT,,,,you also want them to learn how to adapt and HOW do you do that if they are always protected and given these helps.

Ugh.....

It's hard.

Robin

From: Vickie Boehnlein <baneline1msn (DOT) com>Subject: ( ) Frustration Date: Monday, January 26, 2009, 4:09 PM

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated

because either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie

[Guest guest]

It's ok to talk to people who have only NT kids but do not do this in large doses of time. Like anything, too much can kill you. <g>

They don't understand and that's ok because we all wish we didn't have to understand it all either. But one good thing is gathering the ideas for tone set in middle school and instead of letting it get you down, use it make a list of needs.

What kinds of things do they expect in middle school? Will my ds be able to meet those expectations? If not, what help/supports will he need? What can he learn to do with the proper instruction? What will need help long term?

These are the blue prints for your IEP meeting. Discuss these at your meeting and write supports and remediation for these into the IEP.

Also, you need to remember that you don't have to wait a year for another IEP meeting. If you start the school year and notice problems right away, request a meeting asap. You can sit down, work out some solutions, re-write the IEP at any time to reflect changes he needs.

Remember too that having an "IEP" means that your child has specific individual education needs. These are not the same needs that all children his age/grade have. These are special, above the usual needs. That is why it's a disability and why he gets special services. I know that is obvious to everyone! But sometimes we focus too much on what regular NT kids are doing as if our kids will magically turn into an NT child if we just put them in the right place. Or if, just by going to another school or a higher grade, their problems will melt away. But always remember, this is what the IEP is designed to do - support his special needs within the regular education setting (or the LRE, as possible). So no matter how much they want kids to do this or that in middle school, your ds's special needs will require supports. If he can learn to be independent in any areas, that's great! Get him help to learn the skills he needs to be as independent as possible!! But do not expect going in that he has to meet these high expectations on his own or without help.

Also, as my ds's got older, I found that I was having more IEP/Team meetings beyond the once-a-year mold. It helps to get together with the team at the start of the year, especially when you are transitioning to a new school and new people. Meet everyone, discuss your ds's needs, get email addy's or phone numbers, hand our your info so they can contact you, etc. It can help you get off to a good start!

RoxannaYou're UniqueJust like everyone else...

( ) Frustration

So, this is another one of those days where I feel alone in the world because people just don't understand what it is like to have a AS child. I am gearing up for my son's annual IEP meeting. He will be entering middle school next year (5th grade) and so I have to think about how that will impact him. Of course, I have to do this now because it will be half a school year into before his next IEP meeting. I am talking to a friend who has older NT kids that have been through middle school and explaining the kind of things I want to have happen and she is talking about how the teachers expect the kids to need help getting organized and will work with them. I was trying to explain how so many of the things that they need to do is just going to be beyond his abilites and she is offering "helpful" ideas on how I can work on things at home. I guess that I am just feeling very frustrated because either I am around people who, good friend or not, will never understand or I am being defeatist about my son and giving up without trying. I don't want to "give in" to the condition and give up on him but I also don't want to make him feel like a failure his whole life either because he does have limitations. I'm not sure about the balance I need to find here.Thanks for listening. Its nice to know that somewhere out in the world are people who do understand.Vickie

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release Date: 1/26/2009 7:08 AM

[Guest guest]

Thanks for all the support and input. Today is a better day. I just

needed to vent my frustration to others who get it. And thanks for

the reminder that I can call a IEP meeting anytime. I always forget

that. And its not that our school is a problem. They are actually

very responsive and have done a fabulous job with my son.

Vickie

>

> It's ok to talk to people who have only NT kids but do not do this

in large doses of time. Like anything, too much can kill you. <g>

>

> They don't understand and that's ok because we all wish we didn't

have to understand it all either. But one good thing is gathering

the ideas for tone set in middle school and instead of letting it get

you down, use it make a list of needs.

>

> What kinds of things do they expect in middle school? Will my ds

be able to meet those expectations? If not, what help/supports will

he need? What can he learn to do with the proper instruction? What

will need help long term?

>

> These are the blue prints for your IEP meeting. Discuss these at

your meeting and write supports and remediation for these into the

IEP.

>

> Also, you need to remember that you don't have to wait a year for

another IEP meeting. If you start the school year and notice

problems right away, request a meeting asap. You can sit down, work

out some solutions, re-write the IEP at any time to reflect changes

he needs.

>

> Remember too that having an " IEP " means that your child has

specific individual education needs. These are not the same needs

that all children his age/grade have. These are special, above the

usual needs. That is why it's a disability and why he gets special

services. I know that is obvious to everyone! But sometimes we

focus too much on what regular NT kids are doing as if our kids will

magically turn into an NT child if we just put them in the right

place. Or if, just by going to another school or a higher grade,

their problems will melt away. But always remember, this is what the

IEP is designed to do - support his special needs within the regular

education setting (or the LRE, as possible). So no matter how much

they want kids to do this or that in middle school, your ds's special

needs will require supports. If he can learn to be independent in

any areas, that's great! Get him help to learn the skills he needs

to be as independent as possible!! But do not expect going in that

he has to meet these high expectations on his own or without help.

>

> Also, as my ds's got older, I found that I was having more IEP/Team

meetings beyond the once-a-year mold. It helps to get together with

the team at the start of the year, especially when you are

transitioning to a new school and new people. Meet everyone, discuss

your ds's needs, get email addy's or phone numbers, hand our your

info so they can contact you, etc. It can help you get off to a good

start!

>

> Roxanna

> You're Unique

> Just like everyone else...

> ( ) Frustration

>

>

> So, this is another one of those days where I feel alone in the

world

> because people just don't understand what it is like to have a AS

> child. I am gearing up for my son's annual IEP meeting. He will

be

> entering middle school next year (5th grade) and so I have to

think

> about how that will impact him. Of course, I have to do this now

> because it will be half a school year into before his next IEP

> meeting.

>

> I am talking to a friend who has older NT kids that have been

through

> middle school and explaining the kind of things I want to have

happen

> and she is talking about how the teachers expect the kids to need

> help getting organized and will work with them. I was trying to

> explain how so many of the things that they need to do is just

going

> to be beyond his abilites and she is offering " helpful " ideas on

how

> I can work on things at home.

>

> I guess that I am just feeling very frustrated because either I

am

> around people who, good friend or not, will never understand or I

am

> being defeatist about my son and giving up without trying. I

don't

> want to " give in " to the condition and give up on him but I also

> don't want to make him feel like a failure his whole life either

> because he does have limitations. I'm not sure about the balance

I

> need to find here.

>

> Thanks for listening. Its nice to know that somewhere out in the

> world are people who do understand.

>

> Vickie

>

>

>

>

>

>

> --------------------------------------------------------------------

----------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release Date:

1/26/2009 7:08 AM

>

[Guest guest]

I just want to add to this that, yes, it is very hard to deal with the

views of the public and behaviors of our special lil heroes. What ever

you do tho, you never give up. You dig in, hold on, and keep going.

You rock, k? Know that.

[Guest guest]

I share your frustration and appreciate your willing to share it with all of us. It's a steeper learning curve than I ever imagined!

I'm still making mistakes after two years and hope that by year three I will have worked out the kinks. I was also given assurances that "simple avoidance" was the right path.

Give yourself a pat on the back for getting this far. Best, Kathleen Van Velsor