Why Autism?

[MinnieVanMom]

Our DS has been diagnosed with autism for about 3 years now and we have come very far but every now and then I have to ask....why?

Why doesn't our son understand that when he head butts his BFF it hurts, she cries. Why doesn't he care that he hurt her? Why if he did the same thing wrong each day and I swat him, give him a time out, explain what he did wrong, does he do the exact same thing the next day? Why is he in other's personal space? Why doesn't he get "it"? And last, why am I even asking? I know it just is but sometimes I wish I had an answer. He is just so close to being a NT but there is always something a little off. We don't fit in the NT world and we are not in the physical disabled world either.

Autism does suck at times.

[Brightsy]

Awwwwwwwwww:grouphug:
I know just how you feel.
*hands over a box of chocolates and a coffee* Here, have a sit w/ me and we can commiserate.
There are days when I look at my DS7 (he was dx'd at age 2 yrs. 3 months) I wonder why... It really does suck sometimes. (Like yesterday when he had a complete meltdown and nearly broke my nose and glasses...*sigh*) And then there's those other times when he's so sweet.

[sdarwkcabemanmy]

DS doesn't have autism, but I know the feeling. He has had speech difficulties, as well as motor delays and has shown signs of sensory issues as well. There have been days when I just wanted to pull my hair out and go "Why me? This isn't FAIR!".

:hug:

[BeckyScott]

Okay, this goes along with it... Some days I have what I call my own "not fair" days. And I wonder what I must have done in a past life to have this all handed to me. Not that I'm all into the reincarnation thing, but just the idea strikes me every now and then, and I wonder. In my case, I think I must have been somebody like a tyrant that had no empathy for other people, was always only concerned with #1. And apparantly rich and skinny too. :lmao:

I call them my "Galileo" moments, from the Indigo Girls song. Well, it makes me feel better that there's a song about it. ;) Part of the lyrics are Im not making a joke, you know me
I take everything so seriously
If we wait for the time till all souls get it right
Then at least I know there'll be no nuclear annihilation
In my lifetime Im still not right
I offer thanks to those before me
Thats all Ive got to say
cause maybe you squandered big bucks in your lifetime
Now I have to pay
But then again it feels like some sort of inspiration
To let the next life off the hook
But she'll say look what I had to overcome from my last life
I think Ill write a book


Anyway, it's just sort of a funny thing, (funny wierd not funny ha-ha) that I thought someone else here could probably relate to.

I also get scared because I have no idea what the boys' future holds. What happens the day that Mom can't read all the labels and make the allergy-free meals. Or isn't there for the constant reminders to brush teeth, put on deodorant, go to bed, get up, put the trash in the can, take the trash to the alley, put the dishes in the sink.... you get the point. Maneuvering around in the world without a parent or a para tagging along. I hate to sound like a pig, but I don't know if anyone else can do my job, you know? I don't know if anyone else could do all the things that maybe he will need to have done. As he gets older, that thought gets scarier to me, yes he's making progress but there is so far to go.

[buzz for boys]

I can totally relate to everything here and the why ? will kill you if you ponder too long on it!!
I ound a fantastic range of books by guy called Tony Attwood - oh my god its like a book on my ds and the explanation of why he is like he is is just inspirational!!
I found myself not being able to put the book down and really understanding my ds for the first time.
I dont know if you can get it in the usa but id defo reccomend looking!!

[MinnieVanMom]

Thanks friends for the reminder that many do understand how it feels. The uncertainity of what does life bring to the future.

Why or what makes it so our children just don't get it? What else can I do to help my guy? I do ABA, stay constant but I don't swat very much as it doesn't do a thing.

Why don't our kids get it?

I can't keep running away to Disney each time it gets overwhelming. We love the escape but the budget just won't allow it.

[KirstenB]

I hear you. Sometimes Zoe is so interactive, I think it's just a weird dream we've been stuck in for 2 yrs. Other days, both feet are firmly planted in the Planet Autism. She has improved at staying on Planet Earth for increasingly more time. However, as she gets a little older, her eccentricities stand out more, compared to regular kids. On the plus side, she went potty today. Her big sister gave her a piggy back ride to celebrate. Zoe then put her dolls and her bird, Squawkers McCaw, on the potty. Afterward, she gave them each piggy back rides too, which was pretty cool.

[mechurchlady]

Sending you big hugs and snugs and I am NU that person between NT and NV that does not know where to fit in life. All I can do right now is hug you and tell you t will never be easy but you love the ones you are with.:cloud9::hug:

[LuvsTinker]

I get it all too well. I wonder some of the same things and how his differences are so much more apparent now than when he was younger even though he has come so far in the last couple of years; know what I mean?

Why does everything have to be so dang hard? from just socializing to doing homework, or asking me the same question 20 times to get the same answer. Harder to tie his shoes, harder to think about answering a question, harder to read, harder to talk, harder to remember stuff, harder, harder, harder.

:grouphug:

[debbi801]

:hug: I don't know the whys either. My first 2 kids are NT. I was used to being able to say "No you can't touch that" and within a few times of me repeating myself, they'd get it. Now I say "Do not touch that glass, it is fragile" and DS hears that as "OK, at 3:30 pm on Wednesday March 24, 2009, I cannot touch that one specific glass. So, I can touch a different glass or I can wait until 4:30 and then it will be ok to touch it." :lovestruc :rotfl::confused3 If I'm not specific down to the most minute detail, he doesn't get it. And even then, he doesn't get it. :goodvibes It's a good thing he's cute. :)

Someone sent me this last week. It really is helping me understand the rocky parts a bit...

Balancing The Tray
By Lenore Gerould

Those of us who have daily contact with children with autism sometimes have trouble explaining to regular education teachers and administrators, the "hooks" of autism - especially the kinds of support they need. You're always trying to explain the basics. "No, moving the pencil sharpener's location in the classroom is not what upset him. You have to understand that…" Then I came up with this analogy. Perhaps it will help others to visualize the support needed.

Try to imagine the child balancing a large serving tray on one up-turned hand. Every distress for that child is like a liquid filled glass you are putting on this tray. The "distress glasses" are unique to each child… but generally include things like auditory or visual over-stimulation, social interaction, "surprises" or unexpected changes in the schedules, lack of clear leadership, the number of people in the room, whatever is "sensitive" for that child. (Don't forget the inability to read body English and the anxiety of the adults around them!) The size and weight of the "glass" for that child varies. Some things are merely shot glass size, while others can be a two liter jug. At some point, the tray is going to start to wobble… the liquid will start spilling out of the glasses on the tray. The "cues" that this is happening will vary from child to child, just as the cause and size of a "glass" varies from child to child… but generally include regressive behavior, avoidance or "shutting down", giggling or minor "acting out" to get attention. Hopefully someone will help the child re-balance that tray or remove some of the glasses. Perhaps taking a break or allowing time to re-focus or process will work. Again techniques are unique to each child. If there is no intervention, the addition of one more glass will topple the tray to the floor. The cause is not the most recent "glass" you added but the fact that the tray was full or too heavy (the latter is why the child seems so unpredictable to some people.)

Our efforts should be that the child learns to hold a bigger tray or to do minor correction of the tray's balance somewhat independently… but he or she will always carry that wobbling tray. Ignoring "cues" can be disastrous, from classroom disruptions to a major regression. When an autistic child's try crashes to the floor, it is always a major event.

That is why, if I hear my son got highly upset over a moved sharpener and acted out, I do not want to hear that he has to learn to accept change. The sharpener is immaterial, if I learn that day that he dealt with a substitute teacher, a fire drill just as reading was starting, dead calculator batteries halfway through Math, a "crashed" computer in the middle of English, a late bus so he missed part of home room and some fluorescent lights in the class are half out - his tray is already full. All of these "distresses" are unavoidable and he'd dealt with them without a hitch - but each was another glass on his tray.

Autistic children need someone around who is familiar with them - to sense how full the tray is getting and read the cues so there is intervention before that wobbling tray topples to the floor. That is why the type of support for these children is critical - not just a "hot body" nearby - but the right "hot body" whom they can trust will help balance and who knows the "hooks". For all of us, life is a balancing act but for the autistic children, the glasses generally break when they hit the floor and it takes a whole lot longer to clean up the mess and get a new tray...

[BeckyScott]

Why does everything have to be so dang hard? from just socializing to doing homework, or asking me the same question 20 times to get the same answer. Harder to tie his shoes, harder to think about answering a question, harder to read, harder to talk, harder to remember stuff, harder, harder, harder.


And it always amazes me that we all have adapted to it like it's no big deal. Yes he asks the same question 20 times, but he's done it so many times that you're so used to it, that it doesn't even strike you as odd anymore. It's only when you're around somebody new or out somewhere and you notice other people reacting.

I have people comment about how tidy our living room is. Well, it isn't tidy 'cause I'm a neat freak, it's tidy because it has to be. Because I can't have breakable knick-knack crap everywhere. Because we got rid of the furniture with the sharp corners. Because the carpet made the allergies worse. Because I'd like to be able to walk out of the room and not worry about what would get broken. If you guys walked into our living room, you probably wouldn't even notice. :lmao: Well maybe you would, because we all automatically scan any new environment looking for potential problems. It's all harder, but it also all starts to be so automatic, you don't even realize until you step back.

[bookwormde]

Debbi801

That is one of the best analogies I have ever seen for the stress that our children face in balancing the challenges of the neurotypical social world, thank you for posting it.

bookwormde

[debbi801]

I get it all too well. I wonder some of the same things and how his differences are so much more apparent now than when he was younger even though he has come so far in the last couple of years; know what I mean?

Why does everything have to be so dang hard? from just socializing to doing homework, or asking me the same question 20 times to get the same answer. Harder to tie his shoes, harder to think about answering a question, harder to read, harder to talk, harder to remember stuff, harder, harder, harder.

:grouphug:

Yep. When we first started seeing the doctors we've been working with for the past year, they asked for DS's history. the first thing I told them was that from birth, DS was just more. I knew that i'd found doctors that understood NV kids because they got it. They knew what I was talking about. (Previous doctors just looked at me oddly when I'd say that.)

Debbi801

That is one of the best analogies I have ever seen for the stress that our children face in balancing the challenges of the neurotypical social world, thank you for posting it.

bookwormde

Thanks. A co-worker who also has a child on the spectrum sent it to me. DH and I thought it was perfect.

[LuvsTinker]

And it always amazes me that we all have adapted to it like it's no big deal. Yes he asks the same question 20 times, but he's done it so many times that you're so used to it, that it doesn't even strike you as odd anymore. It's only when you're around somebody new or out somewhere and you notice other people reacting.



You're so right; most things don't phase me anymore. My older son will come home from college and question why his brother is doing "that". Duh, because "that" is what he "does". Don't expect him to act like everyone else :upsidedow

[LuvsTinker]

Yep. When we first started seeing the doctors we've been working with for the past year, they asked for DS's history. the first thing I told them was that from birth, DS was just more. I knew that i'd found doctors that understood NV kids because they got it. They knew what I was talking about. (Previous doctors just looked at me oddly when I'd say that.)


MORE is a great way to describe it :)

[Tarheel girl 1975]

I still deal with this all the time. Then I get angry and have a pity party. Noah start kindergarten next year and I'm so worried about it.

[sdarwkcabemanmy]

If you guys walked into our living room, you probably wouldn't even notice. Well maybe you would, because we all automatically scan any new environment looking for potential problems. It's all harder, but it also all starts to be so automatic, you don't even realize until you step back.

::yes::

DS is a chewer, so when we go somewhere new, I'm always scanning for things that might potentially interest him enough to go in his mouth for a good nom. I also try to have at least thing that's safe for him to nom on with me wherever I go, to keep him from nomming on inappropriate things (sleeves seem to be big right now..whether they are his own or somebody elses:rotfl:).

[77SU]

Our DS is now 25, is a diagnosed Aspie, and is able to drive himself to his garden greeter job at WalMart. This is way beyond the diagnosis we had when he was a freshman in HS. Through the early years we kept asking what we did wrong and finally realized it wasn't where we went wrong. Teachers and school administrators didn't understand why he would bang his head on a concrete wall. They wanted to know what switch they could turn to turn it off. They didn't understand why he had to have pencils that had sharp points and couldn't write with a dull-end pencil. He was one of the first Aspie diagnosis in our school system, so imagine our frustration with the special ed folks.

Thanks for the tray analogy. In all these years, this makes the most sense. We always had used a volcano analogy because different pressures would build up and then he would erupt over something most people would think was meaningless. When we looked at what happened over the entire day, it made more sense.

I can't say it gets better, even though things are going better than we ever imagined 10 years ago, but you celebrate the little advancements over the long term. Long term is relative, whether it's days, weeks, months, or even years.

[Schmeck]

I like the tray analogy too - but I wanted to point out that we all carry a tray and try to balance things on it. Think about the last time you lost your temper - was it really because of that one little thing someone did or said, or did you feel the stress building up beforehand? Perhaps people diagnosed with ASD do not feel the stress, or can't communicate that they have stress build-up until it is too late?

[holeceks]

I totally get what you are saying. My DS12 is Aspie, and I ask more than once a day..."why us?"!

Why do "normal" kids have to make fun of him? Why does he not listen/understand? Why does he chose to do something I told him 3 minutes ago he couldn't do? Why do parents of "normal" kids have to judge us as bad parents because my kid misbehaves (in their eyes)? Why do I have to resent them for judging me? Why does my DD9 have get watch other kids tease him and then feel it is her duty to stick up for him? Why can't people accept the differences and just leave him alone?

I tear up every time I ask the "why's". So, why do I keep asking the "why's"?:confused3

[77SU]

I totally get what you are saying. My DS12 is Aspie, and I ask more than once a day..."why us?"!

Why do "normal" kids have to make fun of him? ...Why does my DD9 have get watch other kids tease him and then feel it is her duty to stick up for him? Why can't people accept the differences and just leave him alone?

I tear up every time I ask the "why's". So, why do I keep asking the "why's"?:confused3

I have always said there is no one worse than a fifth grader. During the years of elementary and middle school, the fifth graders were the least tolerant. It wasn't just at school, it carried over to church. He was around a different group of kids, but they were still fifth graders.

[holeceks]

So far that is exactly the case. My DS is a 6th grader this year, but LY I was emotionally drained all year because of the intolerance and plain 'ol meanness he experienced. We actually moved back "home" to where we grew up (a lot smaller town) because I couldn't handle the assault in the bigger school. It has been better this year, but there are still the kids that make fun of him because he is different.

What made it worse LY is that most parents brushed it off as "kids being kids". :sad2:

[BeckyScott]

Oh I don't even wanna hear that! (la la la la I can't hear you!)

Oldest DS is in 5th grade and I haven't seen it too much yet. However. I was waiting until Middle School for the poop to hit the proverbial fan. But he isn't full-blown autism, we're still iffy about an Aspie diagnosis, what I can tell you is I often describe him as "quirky". Quirky isn't necessarily Aspie, but Aspie is usually quirky. ;) And no matter what, quirky is not a good thing in middle school. He doesn't seem to be too concerned at this point with being popular, but he's already gotten the "popularity life lecture" from me.

My bestest friend here has a "quirky" kid in middle school who has been tormented non-stop for about 3 years now. I am pretty scared about next year.

Youngest DS is in 3rd grade and I am hoping against hope that by the time he hits middle school, all that politically correct-"takes a village"-calling everyone "friends"- inclusion- celebrating differences- all that junk- holds true and the kids that already know him and are used to him will alleviate any hassle coming his way. It worked when he was younger that while the kids noticed he was different, he was also really smart (by their standard, as he was an early reader and has a brain like a steel trap) and being smart they would accept him. However, by middle school, being real smart doesn't mean as much.

[SpecEdismyLife]

I get it, believe me I get everything you are all saying 100%. I have my son at home with Autism and the boy I work with at my son's school everyday with it too. I used to ask myself "why me" a lot more than I do these days, but it still comes up now and then when I am crying the bathtub because my son tried to twist my head off my body or something. I realized that my experience with this disorder has given me a specialized skill not many people have, and I have gone back to school and plan to be a special education teacher in order to use these skills to help other children in addition to my son, and hopefully help parents while I'm at it. Just want to say that I agree with everything stated in this thread, hang in there!!

[nwhitehead1214]

I have those days. We all have those days. Pray, pray, pray for the answer. I hope that next year at this time we will see the post-- Remember when....... :hug:

[Schmeck]

Middle school was hard for my 'quirky' girls (no diagnoses, but they have always had a bit of a hard time fitting in, few friends most years, academically very high, etc) but they each were able to find a small peer group that accepted them.

One daughter found her niche in a group of kids that would most likely have scared the pants off of me when I was in school, but they kept each other safe, accepted her for who she was, and never caused any serious trouble. She knew what not to do, even if they were doing it, but I kept tabs on her at all times. She has since moved on from that group, and connected with others. She even has a boyfriend! (Yes, I'm watching that scenario very closely too!)

Second daughter was blessed to find a cluster of other 'quirky' girls (I'd direct you all to their YouTube video, but I want them to remain anonymous here) that really boostered her self confidence in middle school. Too many of them went on to other schools this year though, and we had a rough time at the beginning of school. She's holding her own, but I wish she had her full support group still intact.

For middle school, it's very important to find the person who has the most influence over peer group behavior, scheduling, etc. and make that person your best friend. Sometimes it's the guidance councilor, or the special education co-ordinator. Most times it's one of the aides, who gets to witness things as an almost 'invisible being' to most kids. That person can suggest peer groups for your child, or how a schedule could be altered/tweaked to give your child more support. Of course the aide can't do the actual changes, but he/she can give you some great hints and info!

[goofy4mykids]

Debbi801

Amen! You hit the nail on the head!

I am reading a book (Look Me in The Eye) my life with Asperger's. by John Elder Robison . He was diagnosed with Autism when he was 40.
:grouphug:

[NotUrsula]

Ain't it the truth? We know them, we love them, and even we sometimes just want to explode with frustration after the 54th time of telling them yet again how to do something.

DS11 has issues with instructions. More than two steps and he's lost; and he just can't carry over the idea that once you learn how to do something, you are supposed to keep doing it that way whenever you encounter the same situation. Sunday I just about lost it. We were doing yardwork, and I directed him to pick up the hedge clippings, put them in the disposal basket, then take them to the yard waste dumpster, dump them in, and bring back the basket. OK, he managed that. 10 minutes later, I finished trimming the other hedge and asked him to take care of the trimmings while I dealt with getting a drink for his sister. When I get back he's just standing there looking at the trimmings on the ground. I asked why he didn't pick them up and take them to the dumpster, and his answer was that I didn't tell him to do that.

He's about to fail sixth grade, primarily because he cannot consistently remember to put his name and class number on all of his papers. He loses at least 10 points on every assignment for failure to follow directions.

[holeceks]

He's about to fail sixth grade, primarily because he cannot consistently remember to put his name and class number on all of his papers. He loses at least 10 points on every assignment for failure to follow directions.

Not telling you what to do, but does he have an IEP? We had a VERY INTOLERANT teacher last year (5th grade) who flat out told me in parent/teacher conferences that if my DS can't put his name on his paper she assumed he didn't want credit and would not waste her time even grading it! (Keep in mind that on some things he tests in the genius range but has problems following the simplest of directions) That was about 3 minutes into our meeting. I got up and said as I walked out the door that she clearly didn't understand him and I would not even waste my time talking to her without an advocate. I got on the phone with his doctor the next day, got a referral for a family services advocate, called them, and they had an IEP pushed through in 2-3 weeks. The advocate went with my DH and I to every meeting and fought for my DS's rights as a person with a disability. We had other issues with that teacher later on, and our advocate took care of them.

[NotUrsula]

Not telling you what to do, but does he have an IEP?

Long story, but we've already fought that battle, and we lost. The school considers the following directions thing to be a core skill, and they will not accomodate for it beyond what they already have (instructing the teacheers to give him written rather than verbal directions.)

[bookwormde]

NotUrsula,

For a child with Autism spectrum genetics EF differentials, which give difficulties with linear directions (such as remembering to write there name on the paper) and processing and accommodations for this, are well documented and are relatively standard in IEPs. It is not up to the school to decide this, it is a matter of the IEP team determining he has a need and concern is this area, and what is an appropriate and effective accommodations. If you do not agree with the rest of the IEP team you need to take it through due process. Once you get a “specialist” to give their opinions it will quickly become apparent that the school does not know what they are doing.

Your child should not be “punished” for their ingnorance.

bookwormde

[holeceks]

NotUrsula,

For a child with Autism spectrum genetics EF differentials, which give difficulties with linear directions (such as remembering to write there name on the paper) and processing and accommodations for this, are well documented and are relatively standard in IEPs. It is not up to the school to decide this, it is a matter of the IEP team determining he has a need and concern is this area, and what is an appropriate and effective accommodations. If you do not agree with the rest of the IEP team you need to take it through due process. Once you get a “specialist” to give their opinions it will quickly become apparent that the school does not know what they are doing.

Your child should not be “punished” for their ingnorance.

bookwormde

Well said, bookwormde!

NotUrsula, this is not easy to say but I was intimidated by the school administrators who made me feel like an idiot & a bad parent. That went on for 4 years (2,3,4th grades were manageable...1st and 5th not so much because of the teachers). We had originally tried to get an IEP in first grade because he was being sent to the principle's office almost daily for clearing his throat and sharpening his pencil...they constantly used the excuse he was disruptive to his classmates. I wanted him to have the ability to go to a different room if he needed to, but not get in trouble for "being disruptive when he has been told over and over again to stop". We were shot down because on intellegence tests he scored exceptionally well and he didn't need extra services for this...so they said he didn't qualify for an IEP. His teachers in the following years were much more accepting of him and his differences, until we got to 5th grade. I had tried numerous times to reason with his 5th grade teacher and explain his situation, but she said to me over the phone when she tells a student to do something, they are old enough to know they better do it or accept the consequences. Hence, the P/T conference was set up. As I said previously, I ended up walking out of it because I felt like I was beating my head against a very rough brick wall. :headache:

We requested another IEP determination in writing, and walked into the meeting without telling anyone else on the team we were attending the meeting with an advocate. You should have seen the looks on their faces when we walked in, they were shocked! The rest was relatively painless.

So, the moral of this huge post is not to give up. Find someone that knows his rights and go in armed!

Hang in there! :cheer2:

[NotUrsula]

Sorry, I seem to have inadvertently hijacked the thread. :blush:

While I appreciate the input I've been offered, in this case it is up to the school, as it is a private school. In this state they are by law entitled to set limits on what accomodations they will allow in their own classrooms. We can choose to accept their limits, or we can choose to enroll him elsewhere. Given the available alternatives that we have at this time, we choose to accept their limits.

Thanks, folks, and back to the OP's regularly scheduled thread.

[bookwormde]

We wander all the time so do not worry about that, yes if you are not in a school that receives public $ it is a lot more difficult to get the proper services. Good luck it is not an easy decision when the public schools in your area are not very good. I would still give them a copy of Attwood so hopefully they can learn something, it is a cheap $25 investment.

bookwormde

[Schmeck]

We requested another IEP determination in writing, and walked into the meeting without telling anyone else on the team we were attending the meeting with an advocate. You should have seen the looks on their faces when we walked in, they were shocked! The rest was relatively painless.

So, the moral of this huge post is not to give up. Find someone that knows his rights and go in armed!

Hang in there! :cheer2:

I'm sorry that it had to come to the surprise advocate level for you. The really sad thing is that now you and your child have one of 'those people' labels, that can follow you all the way through public school. Expect a fight every time you need to change the IEP, although I hope it doesn't come to that. It's really sad when a child's well being turns into an us-against-them situation. I've seen it happen so many times, and when something could be really easy to fix if we all took the child's best interests and future potential as the only thing that counted, in reality it becomes a battle to see who has the most power to get what they want.

[mechurchlady]

Sorry, I seem to have inadvertently hijacked the thread. :blush:

While I appreciate the input I've been offered, in this case it is up to the school, as it is a private school. In this state they are by law entitled to set limits on what accomodations they will allow in their own classrooms. We can choose to accept their limits, or we can choose to enroll him elsewhere. Given the available alternatives that we have at this time, we choose to accept their limits.

Thanks, folks, and back to the OP's regularly scheduled thread.
This board rolls with the punches and often takes side trips to help others.

I think for thread highjacking you should go to the time out corner. Our time out corner is Casey's Coke Corner so set a spell in the corner with chili, hot dogs, chips and a cherry Coke. I will slip you a dole whip when the guards are not looking. :hug: :thumbsup2

I joke a lot but honestly most of us want the best for kids and to help people so they do not make mistakes and are not bullied by schools. Children need early therapy and training to overcome their limitations and a school that tells you there are no limitations need a massive layoff.

[holeceks]

I'm sorry that it had to come to the surprise advocate level for you. The really sad thing is that now you and your child have one of 'those people' labels, that can follow you all the way through public school. Expect a fight every time you need to change the IEP, although I hope it doesn't come to that. It's really sad when a child's well being turns into an us-against-them situation. I've seen it happen so many times, and when something could be really easy to fix if we all took the child's best interests and future potential as the only thing that counted, in reality it becomes a battle to see who has the most power to get what they want.

I really could care less if I have a 'those people' label. The teacher was "old school" who was there solely to earn a paycheck, I had tried to talk to her about it and she was unreasonable. It is our right as parents to bring an advocate for our son to IEP meetings, so we enforced our rights. I am not ashamed for sticking up for the interests of my kid, and I don't think other parents should be, either. For us it was not a matter of asserting our 'power' as you put it, it was a matter of making the year better for our DS.

[Schmeck]

I really could care less if I have a 'those people' label. The teacher was "old school" who was there solely to earn a paycheck, I had tried to talk to her about it and she was unreasonable. It is our right as parents to bring an advocate for our son to IEP meetings, so we enforced our rights. I am not ashamed for sticking up for the interests of my kid, and I don't think other parents should be, either. For us it was not a matter of asserting our 'power' as you put it, it was a matter of making the year better for our DS.


I agree that you did the right thing, just giving you a heads-up to what you might experience (hopefully you won't!) in the coming years now. I've got the experience from the other side of the table, so to speak, and hope that my insight can prepare and help the parents here do the best for their children.

[BeckyScott]

It so much depends on the teacher.

My oldest DS had some trouble in 2nd grade. But I knew his teacher and while she was teaching regular 2nd grade, she was certified as a SpEd teacher. So she was very flexible and willing to work with me and everything went relatively well.

3rd grade was a little harder, but the teacher was all right. That was the first time I'd pursued evals for him, and the teacher was cooperative enough, it was the SpEd people that balked. But we made it through, a little rough, but made it.

4th grade we had an "old school" teacher, but she was great. I think she'd just seen it all so much that it took a whole lot to throw her off. And she was a good teacher and had enough experience that she could flip from one thing to the next if something wasn't working. She did quite a bit of that for DS, however, it was all "off the record". And I appreciate that she did it. But nothing was in writing so that tripped us up the next year.

Finally this year I pursued it enough, he has an IEP with some minor accomodations. The biggest thing though, was that the SpEd teacher gets him if he runs out of time in class or for test proctoring, and she has been great with him. (she does great with youngest DS too) This is what I think happens, honestly-- the staff all know each other. And just like any other workplace, not everyone is going to get along swell. And I think they know what I've been up against with DS's teacher, although they can't say anything to me. And I think that even though they thought I was nuts and a problem parent, once he got pulled out and they worked with him more, they saw what was happening.

But Middle School calls, and I have no idea what we're in for.

[jodifla]

I agree that you did the right thing, just giving you a heads-up to what you might experience (hopefully you won't!) in the coming years now. I've got the experience from the other side of the table, so to speak, and hope that my insight can prepare and help the parents here do the best for their children.

Often, it's the schools that put parents in the unfortunate position of being "those parents." If parents don't advocate for their own children, who will?

The sad thing is, I wonder every day how many children's lives are ruined by "educators" who mislabel them and ship children away to segregated classes where they are basically warehoused instead of taught.

[Schmeck]

Often, it's the schools that put parents in the unfortunate position of being "those parents." If parents don't advocate for their own children, who will?

The sad thing is, I wonder every day how many children's lives are ruined by "educators" who mislabel them and ship children away to segregated classes where they are basically warehoused instead of taught.

The school system I teach at does not "label" the children at all - the diagnoses of medical/mental disabilities comes from a medical doctor. Learning disabilities are addressed by school testing, which is all documented. I'd never rely on an education system to diagnose a spectrum disorder, or anything else of that level.

I feel sorry for all of you in school systems that you feel you need to bring 'surprise advocates' to meeting's etc. Of course, in this school district that wouldn't work, as every person that comes through the front door has to be invited - if the advocate wasn't on the list the advocate wouldn't make it through the second set of doors. The advocate has to be on the list - the parent has the right to invite anyone, but has to notify the school ahead of time for that person to be let in past the main office. The meeting would have to have been rescheduled so that the advocate could be put on the appropriate list, for the next day at the earliest. We have very tight security, especially past the main lobby.

Once again, student confidentiality keeps me from telling you about some pretty amazing demands made by some parents.

[BeckyScott]

The school system I teach at does not "label" the children at all - the diagnoses of medical/mental disabilities comes from a medical doctor. Learning disabilities are addressed by school testing, which is all documented. I'd never rely on an education system to diagnose a spectrum disorder, or anything else of that level.


Schmeck, you know I'm not trying to pick on you, you know I'm not ;) but I have a question for you.

What happens then, if you have a child who has been diagnosed with something (anything, really, although of course I am looking at spectrum mostly) and the school doesn't agree with it? Because they can do that, and they will. That's why the whole Procedural Safeguards is in place. You go to the dr, get a diagnosis, the school doesn't want to do anything-- then the procedural safeguards kick in. That seems to be a big reason they were created, which would lead me to believe it's not a rare occurance.

It seems like sometimes the school system wants it both ways... They don't want the responsibility of doing an eval, of having the qualified people in place to do evals, they expect you to go to a doctor/psych for that. They are not in the business of medicine/psychology. But at the same time, they want the right to disagree, to say a child doesn't qualify for services, when the parent could have a doctor/psych evaluation that specifically states that a child needs certain things. So which is it? Who is "right"? If the school doesn't want the responsibility of diagnosing, then they shouldn't have the right to disagree.

Our school district, once again, and I can't even begin to tell you how often this happens, is pulling the "medicate them or they can't come back" routine on a friend of ours. The school doesn't care what the doctor says. I'm sorry, but the last time I checked nobody in our school system is an MD or anything even close to it. But they feel they have the right to tell a parent to drug up their kid? And I know, I know, if the school says it, then it's "on them" to take care of it, and I know you should go get a lawyer. But I also know that most parents are intimidated, or they can't afford to get a lawyer. For every story of an overly-demanding parent, there's another story of a school that overstepped their boundaries.

edited to add: I went to a meeting with a good friend about a month ago, for her DS. He is pretty much alphabet soup- ODD, ADHD, Aspie, anxiety, etc- She had a note, less than a week old, from a child psych with his alphabet of diagnosis, saying that the child should have certain things in place. Organizational helps, social skills, that sort of stuff, really nothing major. The school's conclusion: He has no LD's. Thank you very much, don't let the door hit ya on the way out. I mean, what is that? Now what does she do? I said, you'll have to get an advocate or a lawyer. Yeah, righty, so now she has to pay someone to go in and "scare" the school into helping her son? The school isn't qualified to diagnose him, but they are qualified to disagree?

Isn't that sort of like the scam with SSI? Deny everyone, and see who is willing to pay a third party for help? Deny everyone so we can weed out who is serious?

[Schmeck]

In our school system, we don't accept accommodations 'prescribed' by a doctor, just as a doctor shouldn't accept a school system's medical evaluation.

I'll try to detail the process without going over the confidentiality boundary:

1. Parent or school requests an initial meeting because a child is suspected of having a disability. The parent may have documentation already of a medical/mental disability from a professional.

2. Preliminary meeting is held to decide if an IEP or 504 is needed, most of the time academic testing is set up first.

3. Another meeting is held after academic testing. Recommendations are made by the school staff. The parents are asked for input. At this meeting it is decided what goes in the ed plan, if there is to be one. Other options can also be given.

4. The IEP is created, sent home to be signed or not signed. If the parent refuses the IEP, another meeting is scheduled. The parent is asked before the meeting to bring anyone and anything to this meeting to help everyone figure out what is wrong and how to fix it. Sometimes the parent asks for the moon, and it is impossible to meet all demands as they conflict. This is pointed out.

At no time is the parent forced to sign for services they do not want, or if they are not getting the services they want for their child. Medication is a private issue, behavioral/safety issues are dealt with quickly. All children need to be safe before anything else can occur. If a child, even one with a disability, cannot behave safely in a school, then other arrangements need to be made. Until the school system and the parent agree on that, then services already in a signed IEP take place outside of the school.

[bookwormde]

Schmeck, It is interesting how your district does things.

The nuances between states is always interesting, our states procedure is a follows:

The parent or school recognizes a potential disability or issue possibly covered under IDEA, either request an evaluation (it is virtually unheard of for the district to refuse to do an evaluation). Parental permission forms are then signed for the evaluations. If there are any medical reports or evaluation, which the parents choose to share with the evaluation team, they are sent.

Once the evaluations are complete (no more than 60 days) there is an IEP meeting to determine educational classification under IDEA. If the child meets one of the classifications, then either the meeting continues to develop an IEP or a meeting is scheduled. If the child does not meet the criteria for one of the classification under IDEA but still has issues which need to be addressed under 504 then the process moves in that direction. The parents are full and equal participants in the classification determination and if they disagree with the consensus may invoke administrative process as a part of an appeal.

An IEP determination may not be undertaken without the necessary school evaluations or equivalent private evaluations. If the parents disagree with any of the schools evaluation the may have “private” evolutions done which are paid for at standard and customary rates paid for by the school.

Once the IEP meeting moves on to developing an IEP, all members continue have input. The parents have equal input as the school. The current “situation” that the child faces are reviewed, strengths, needs and concerns are listed and consensus is reached as to those, which are related to his/her IDEA educational classification. Again if there is not conesus the disagreement move to the “process” phase and the areas of consensus move forward. Supports accommodations, modification to the education process and materials are developed for each of the needs and concerns. Again if there are areas were consensus couldn’t be reached these move on to the “process” phase and for the rest representative measurable goals are developed. Often the supports, accommodations and modifications, and development of goals are done sequentially for each concern or need for the sake of efficiency. As a major part of this process the team must evaluate if the child’s needs can be met in the least restrictive environment, when given full and comprehensive supports, accommodations and modifications. If the child’s needs can not be met in LRE (1st level is the standard classroom) the next level is evaluated (typically an inclusion classroom), if the child’s need can not be met in this next level of LRE the process continues though all the subsequent level until the lest restrictive environment that will meet the child’s needs is found.

In all of this parents are equal partners. The parent also have the right to bring support people or any other who have useful knowledge of their child, the IEP process or identifying concerns and needs and developing appropriate supports, accommodations and modifications and associated goals.

With the complexity of autism spectrum classification it is not uncommon for this to take more than one meeting.

When the meeting is done a “draft” IEP is complete. It is typed up without substantive modifications and distributed to all IEP members for review and comments. If any member of the IEP team believes it does no represent the consensus of the IEP team they may send a note as such and the IEP meeting is reconvened to assure that the IEP represents the consensus of all the members of the team. If there is any area where consensus cannot be reached any member of the IEP team may enter into process to have this discrepancy decided.

It is actually quite rare for issue to have to go to process, unless someone on the IEP team is grossly uniformed about IDEA and is unwilling to look at the regulations or the clinical or educations evaluation and recommendations.

Once the IDEA educational classifications made all behavior issues must have a manifestation determination done, if there are significant safety or behavioral issues these must be addressed in the IEP and in the intervening time the child must be provided education in a setting which is “safe” for all involved.

When all the areas that consensus that can be reach on are complete the IEP is signed by all members of the team and prior written notice of all areas were are a member of the IEP team feels IDEA and the needs or the child were not met is generated and signed to begin “process” for those areas. The IEP typically goes into effect as soon as it is signed, however there are circumstance where there many be some “time allowances” for item, which cannot be accomplished immediately.

I hope this provide a little insight into how the process is supposed to work, it sound complicated but actually when all IEP members focus on the needs of the child as the primary goal it actually goes quickly and smoothly. It is only when you have parents that do not understand their child’s need’s or administrators who try to interject administrative convenience issues that the process breaks down.

There are a few nuances and details that I left out but in most cases they are inconsequential unless the whole process breaks down.

bookwormde

[Schmeck]

bookwormde, we said the same thing, you just used a whole lotta more words, LOL!

[Libbyt]

I can relate to your "why" phase! I think for the first few years after our daughter was initially diagnosed, we were so busy trying to "fix it" and do something to help her, that "why" didn't even occur to us. Then we sort of hit a plateau with the therapies and I began to fixate on it - felt like I had to know a reason why it happened. But some things you just never get an answer to......Sally was initially diagnosed with developmental issues at age 2 1/2 - 3.......now she's 19 and just recently got a NEW diagnosis that explains a lot of the other things.

I also don't really believe that there's a state of acceptance vs. denial. You can't (or I can't anyway) just ACCEPT that your child is flawed and go on with life - you just learn to cope with it as best you can. It still hurts every day, to some degree - most days less than others.

I still have the days when I just want to tear my hair out, but then Sally has these moments of absolute clarity and insight and I realize that she understands things better than I do, better than other kids her age, better than the wisest of philosophers! :cheer2:

[bookwormde]

Schmeck,

Yes I tend to do that.

bookwormde

[MinnieVanMom]

I can relate to your "why" phase! I think for the first few years after our daughter was initially diagnosed, we were so busy trying to "fix it" and do something to help her, that "why" didn't even occur to us. Then we sort of hit a plateau with the therapies and I began to fixate on it - felt like I had to know a reason why it happened. But some things you just never get an answer to......Sally was initially diagnosed with developmental issues at age 2 1/2 - 3.......now she's 19 and just recently got a NEW diagnosis that explains a lot of the other things.

I also don't really believe that there's a state of acceptance vs. denial. You can't (or I can't anyway) just ACCEPT that your child is flawed and go on with life - you just learn to cope with it as best you can. It still hurts every day, to some degree - most days less than others.

I still have the days when I just want to tear my hair out, but then Sally has these moments of absolute clarity and insight and I realize that she understands things better than I do, better than other kids her age, better than the wisest of philosophers! :cheer2:
Very well said. I am right there with you. I don't really ever accept the autism but more that I just cope with the child I have not the one I had.:hug:

[BeckyScott]

This is how it works in our school district. Two different examples, because both of my kids had different experiences.

Youngest: Was in Early Intervention. Transitioned to SpEd preschool w/ an IEP, then into elementary with an IEP. Nobody questioned his diagnosis, he was already in the system so the transitions were dealt with smoothly. And as far as I can tell, he got all the "standard" autism stuff, without being put into a track.

Oldest: Parent requested eval in 3rd grade but school staff said they weren't concerned so they didn't pursue it. Parent requested eval in 5th grade. Parent had long annoying meeting with SpEd coordinator, classroom teacher, and principal because child was falling thru the cracks due to the inability of the school to *do something*, please. The school squeaks in evals in the last possible days it can.

The eval for math LD confuses me. The test they ran put DS slightly delayed, but only a couple of months and not enough for LD. I look at the test. It has very basic math, I see nothing beyond multi-digit addition and subtraction. This is not 5th grade work. At the time, they were doing multi-digit multiplication and division and decimals. I question it. I understand, yes, that it is a standardized test used all over the US, I get that and that was certainly pointed out to me, but I don't think it is a very good test. I don't expect our little ole school district to buck the system and say the standardized test used all over the US isn't accurate. However, people please, a child takes a test that has 3rd grade work on it, does pretty well, I don't see how that makes him not LD as a 5th grader. But anyway, nothing can be done about it.

There is discussion about DS's diagnosis (currently ADHD) and that I have no intention of upping his meds due to undesirable side effects. The Aspie screening is borderline, relying heavily on parent input, as the teacher hasn't noticed much. An IEP for OHI is put into place to shut up this particular parent. :rolleyes1

After it is in place, the SpEd teacher (the one in the trenches) sees that DS has a great deal of trouble in math. She takes it upon herself to go beyond the IEP and tutor DS three mornings a week, before school, which the parent is more than happy to take him to because it confirms that she's not an idiot.

The teacher expects DS to remind her about his accomodations. DS can't remember to brush his teeth in the mornings :sad2: much less remember to tell the teacher he gets to go to a different room for his test. The teacher routinely sends home graded work where DS is marked down for bad handwriting. (like spelling tests where she thinks they are spelled wrong, but they're not, he has messy writing) DS also has other things to do, for example he is supposed to go to the nurse after lunch to brush his teeth (long story) but they put it on him to remember, even though they know he doesn't remember stuff. I guess I'm supposed to call the school daily to remind them to remind him? The parent gives up and prays the next year will be better.

The "rumor" is that once the child gets older, like in the next year or so, the middle school and junior high like to try to drop IEP's if they're fairly mild ones. You know. If the child only has minor modifications, they try to figure out a way to dump the IEP. I spent way too long trying to get one in place.

While it seems like everyone else has a lovely system in place that works the way it's supposed to, that isn't the case for every school district. Ours follows the law. They know the law. However, I personally see a difference between the letter of the law and the spirit of the law. Maybe because I'm on the other side of the desk.

[bookwormde]

Beckeyscott,

What I posted is the way it is supposed to work, unfortunately in a majority of cases it dose not, especially if the parents or teachers are dealing with an area that they do not have a lot of experience with the IEP process or the specific area of need. Lots of kids still fall through the “cracks”. The district will still try to use “convenient excuses” which do not follow the regulations if they can “get away with it”.

bookwormde