Author Topic: Talk to me about Autism  (Read 15514 times)

Stachetastic

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Re: Talk to me about Autism
« Reply #50 on: November 07, 2016, 05:32:37 AM »
Kind of an side, but have you heard of Temple Grandin? I have read her mother's book and several of her own. There was even a movie made starring Claire Danes. Good stuff. Start with her mother's book, "A Thorn In My Pocket".

https://www.amazon.com/Thorn-My-Pocket-Temple-Grandins/dp/1932565167

I've got some of Temple's stuff on my "make time to read/watch" list, but I didn't know her mother had also written a book. Thanks for the recommendation!

Stachetastic

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Re: Talk to me about Autism
« Reply #51 on: November 17, 2016, 09:52:20 AM »
Not much to update at this point, we have a meeting with our attorney a week from Monday to see if he has any more suggestions. We are willing to move, so we got pre-approved for another mortgage, and are casually house hunting while we crunch some more numbers. Financially, we know it makes the most sense to just move into our rental until our current house is done and sold, but we also know that would mean moving again in the near future. Finishing the work on our current house, selling it, and buying another to move into does not look likely before next school year starts. It would also be much easier to finish our current house without us in it (ceiling work, refinish floors, etc.). My mind is constantly working all the details on all of these scenarios, and it feels overwhelming.

I've said all along that this is such a first world problem (Look at all our options!), which I was reminded of again this week when a coworker's son (same age as my son) was diagnosed with cancer. This all feels so trivial compared to that.

VAR

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Re: Talk to me about Autism
« Reply #52 on: November 19, 2016, 01:02:42 PM »
Not much to update at this point, we have a meeting with our attorney a week from Monday to see if he has any more suggestions. We are willing to move, so we got pre-approved for another mortgage, and are casually house hunting while we crunch some more numbers. Financially, we know it makes the most sense to just move into our rental until our current house is done and sold, but we also know that would mean moving again in the near future. Finishing the work on our current house, selling it, and buying another to move into does not look likely before next school year starts. It would also be much easier to finish our current house without us in it (ceiling work, refinish floors, etc.). My mind is constantly working all the details on all of these scenarios, and it feels overwhelming.

I've said all along that this is such a first world problem (Look at all our options!), which I was reminded of again this week when a coworker's son (same age as my son) was diagnosed with cancer. This all feels so trivial compared to that.

I am a SLP. My area of specialization is ASD, usually work with kids more severe than yours. But if this were my situation, I wouldn't hesitate to move. There are things that are  legally your "rights" as parents/students etc. but the reality is there are limits, goals, and priorities at every school that are unstated. It's clear this school is not prioritizing special education. So why fight to be included in their sub par system? It will affect all of your family for a very long (forever?) time.

I've worked, as a highly motivated professional, in a school that was not very badly regarded for special ed. But the administration's priorities were test scores and other things I couldn't begin to understand. I only know my kids were not treated well, relegated to a corner of a very large building and generally treated like alien creatures nobody knows what to do about.

I worked at another school where the special education kids, no matter how severe, were included as much as possible. I watched my kids participate in the school performances and all activities. All teachers in the building talked to them and knew them, they were mostly integrated into the school culture. A huge difference. This school was in a poorer district and on paper should have been the "bad" school for special needs. They didn't have the $ to throw at the issue but they had the heart and those kids did much better.

Kansas Terri

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Re: Talk to me about Autism
« Reply #53 on: November 19, 2016, 02:38:36 PM »
Laws change, and my kiddo is now 22. So I will not give school advice, excepting to ask if you got a book discussing your child's rights? Memorize it.

About reading and writing: it worked out better to give him disguised "lessons" at home. Basically, I took him to a book store. I had noticed he liked trains and so I let him pick out books with wonderful pictures, and of course I started him out at the train section. Some of those books were kind of expensive but I did not CARE! So, along with "C is for Caboose" and "Thomas the train" we got picture books with pictures of exploded engines and all of the parts labeled.

He loved having picture books in bed at night, and eventually he wanted me to read a bit of them. So I did.

He never DID read for his first grade teacher, as she was stuck on talking bunnies and other talking animals and as a country boy he knew bunnies did not talk and he said it was "stupid" . But I used to read to him and sound out the hard words for him, and by the time he was 12 he got a reading award for reading 3 Harry Potter books.

As for numbers, my son has a very CONCRETE view of life. I taught him basic arithmetic by using M&M"s. He thought the lessons were hard and he did not like them, even though after every formula he got to eat the candy. But it got done.

Kansas Terri

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Re: Talk to me about Autism
« Reply #54 on: November 19, 2016, 04:53:30 PM »


Very good examples of how much can be done with time and effort and not a whole lot of money -- while you had the resources to buy books for your son, if you hadn't hopefully there would have been a public library to utilize.
For autism, used book stores are much better, and we did the used book stores as well. If he liked a book then he would look at it every night for months, and that is why he learned his first reading lessons WELL! It gave him a solid foundation to build on. Kids at any stage of the autistic spectrum can be obsessive, and that can be used to their advantage. He was reading the same words over and over again for months.... as did I. "The  B&O locomotive climbs the  hill at Lompoc. California" over and over again as it was under a favorite picture of one train. He read that book for over a year, and I still have it somewhere. I think. I bought it used, and it was something like 40 years old and obviously intended for young adults. But he liked it because it had good pictures.

He would have his toys and books in bed with him, and when he was using the books I would "not notice" for an extra half hour, and then I would "Discover" his light was still on.

That added the lure of getting away with something to the pleasure he was taking in his books. It was maybe 6? months before he asked me to read what was below the pictures of a young adult book. I was truly shocked when I realized he had already figured out all of the one and two syllable words: he WAS learning in his classrooms and from when I read his Thomas the Tank Engine books: he just had not wanted to read at all for his teacher or read very much for me. He would have been around 6-7 years old, and he was big on not doing things he did not want to do. So he did not read for people until he felt like it.
« Last Edit: November 19, 2016, 05:06:38 PM by Kansas Terri »

Kansas Terri

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Re: Talk to me about Autism
« Reply #55 on: November 19, 2016, 05:24:49 PM »
My son is not on the spectrum, but he was similarly obsessive at that age.  His book obsession when he was 6-7 was a book we found at the thrift store called "How Things Work."  It had all kinds of everyday objects like TVs and microwaves and even things like electrical grids and broke down how they were put together and how energy flowed through them to make them work.  He would spend HOURS looking at it himself, and for awhile it was the only book he was interested in having us read to him.
They learn SO much when they do this!

Psychstache

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Re: Talk to me about Autism
« Reply #56 on: November 20, 2016, 03:18:51 PM »
Checking in as a former school psychologist who evaluated students for ASD and current central office administrator for special education.

It boils my blood when schools misinform, mislead, or outright lie to parents of students with disabilities and act like federal law doesn't apply to them. Others are probably right that the easiest way to get your child appropriate services is to move, but as long as you are at your current school, I would start to get firm and legal in your response to them.

1. Make sure you have a copy of your state's operating guidelines for special education. I beleive I saw previously you are in Ohio, so here is a copy:

http://education.ohio.gov/getattachment/Topics/Special-Education/Federal-and-State-Requirements/Operational-Standards-and-Guidance/2014-Ohio-Operating-Standards-for-the-Education-of-Children-with-Disabilities.pdf.aspx

2. Also make sure you get a copy of and some information about the federal law for special education, The Individuals with Disabilities Education Act (IDEA). Here is a start:

http://idea.ed.gov/explore/home

Use the sidebar to review major topics.

3. You need to submit all of your requests to the district in writing with time stamps. Get copies of everything you give them a copy of and make them mark when they received it. If they fail to follow through (like ignoring your request for an evaluation), file a compliant with your state education agency or your Office of Civil Rights (an OCR compliant). This will get the attention of the bigwigs in district admin and they are all terrified of legal action, so you should see some movement.

4. Fight like hell for your child if the school is being lazy about following the IEP. If he has accommodations that they are not following, demand some system of accountability for the teachers. If you disagree with the IEP, say so in the IEP meeting. Do not feel obligated to agree with them and move to mediation if you need to resolve the ARD with a third party present.

5. Beware of special education advocates. In my state, there are absolutely no requirements, certifications, or regulations on who can call themselves an advocate. Any nincumpoop that can print business cards and make a website can become a special education advocate. Some are good, and some are just swindlers looking to make some money off you while they know crap all about the law. If you decide to get an advocate, be sure to interview/vet them thoroughly and as always make sure you know the law well enough to call out the snake oil salesmen (honestly, there are a lot of parallels with financial advisors).

6. I know I already said it, but it bears repeating: BE SURE TO PUT ALL REQUESTS TO THE SCHOOL IN WRITING AND GET A TIMESTAMPED COPY OF WHEN THEY RECEIVED IT.

I know this sounds super pushy, but the school has shown that the already and not interested in doing what your child legally is required to get to be successful, so it is time to be the squeaky wheel that gets the grease.

I would be happy to answer any questions via PM that you might have (as best I can, I am only an expert in my state and state law can vary a fair bit. also IANAL) so feel free. I am happy to help you try and whip this school into shape for students with disabilities :)


P.S. I am not a fan of starting off your interactions with schools this way, but once they show you that they will ignore the law, it is time to bring down the hammer.

edited: typo

Stachetastic

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Re: Talk to me about Autism
« Reply #57 on: November 20, 2016, 03:40:33 PM »

I am a SLP. My area of specialization is ASD, usually work with kids more severe than yours. But if this were my situation, I wouldn't hesitate to move. There are things that are  legally your "rights" as parents/students etc. but the reality is there are limits, goals, and priorities at every school that are unstated. It's clear this school is not prioritizing special education. So why fight to be included in their sub par system? It will affect all of your family for a very long (forever?) time.

I've worked, as a highly motivated professional, in a school that was not very badly regarded for special ed. But the administration's priorities were test scores and other things I couldn't begin to understand. I only know my kids were not treated well, relegated to a corner of a very large building and generally treated like alien creatures nobody knows what to do about.

I worked at another school where the special education kids, no matter how severe, were included as much as possible. I watched my kids participate in the school performances and all activities. All teachers in the building talked to them and knew them, they were mostly integrated into the school culture. A huge difference. This school was in a poorer district and on paper should have been the "bad" school for special needs. They didn't have the $ to throw at the issue but they had the heart and those kids did much better.

Thanks so much for your insight. It is amazing to me how much schools can differ from one another, even within the same community. I think I mentioned before that I've only ever heard bad things about our school in regards to special ed. If we had known we had a special needs kiddo when we bought in this district, we definitely would have reconsidered. It's also good to know that the amount of $$ in a given district does not necessarily translate into better service. We are in the "richest" district in our county, by demographics.


Checking in as a former school psychologist who evaluated students for ASD and current central office administrator for special education.

It boils my blood when schools misinform, mislead, or outright lie to parents of students with disabilities and act like federal law doesn't apply to them. Others are probably right that the easiest way to get your child appropriate services is to move, but as long as you are at your current school, I would start to get firm and legal in your response to them.

1. Make sure you have a copy of your state's operating guidelines for special education. I beleive I saw previously you are in Ohio, so here is a copy:

http://education.ohio.gov/getattachment/Topics/Special-Education/Federal-and-State-Requirements/Operational-Standards-and-Guidance/2014-Ohio-Operating-Standards-for-the-Education-of-Children-with-Disabilities.pdf.aspx

2. Also make sure you get a copy of and some information about the federal law for special education, The Individuals with Disabilities Education Act (IDEA). Here is a start:

http://idea.ed.gov/explore/home

Use the sidebar to review major topics.

3. You need to submit all of your requests to the district in writing with time stamps. Get copies of everything you give them a copy of and make them mark when they received it. If they fail to follow through (like ignoring your request for an evaluation), file a compliant with your state education agency or your Office of Civil Rights (an OCR compliant). This will get the attention of the bigwigs in district admin and they are all terrified of legal action, so you should see some movement.

4. Fight like hell for your child if the school is being lazy about following the IEP. If he has accommodations that they are not following, demand some system of accountability for the teachers. If you disagree with the IEP, say so in the IEP meeting. Do not feel obligated to agree with them and move to mediation if you need to resolve the ARD with a third party present.

5. Beware of special education advocates. In my state, there are absolutely no requirements, certifications, or regulations on who can call themselves an advocate. Any nincumpoop that can print business cards and make a website can become a special education advocate. Some are good, and some are just swindlers looking to make some money off you while they know crap all about the law. If you decide to get an advocate, be sure to interview/vet them thoroughly and as always make sure you know the law well enough to call out the snake oil salesmen (honestly, there are a lot of parallels with financial advisors).

6. I know I already said it, but it bears repeating: BE SURE TO PUT ALL REQUESTS TO THE SCHOOL IN WRITING AND GET A TIMESTAMPED COPY OF WHEN THEY RECEIVED IT.

I know this sounds super pushy, but the school has shown that the already and not interested in doing what your child legally is required to get to be successful, so it is time to be the squeaky wheel that gets the grease.

I would be happy to answer any questions via PM that you might have (as best I can, I am only an expert in my state and state law can vary a fair bit. also IANAL) so feel free. I am happy to help you try and whip this school into shape for students with disabilities :)


P.S. I am not a fan of starting off your interactions with schools this way, but once they show you that they will ignore the law, it is time to bring down the hammer.

edited: typo

Thank for all the info, Psychstache! Wow, so much to review (and some I've seen before). I should mention that the advocate I have been speaking with has not even mentioned any services she offers, beyond answering my calls/emails. She works with our local branch of the state Coalition for Education of Children with Disabilities. She has not offered to come to any meetings, etc.

At this point we are leaning toward "run for our lives" from this district, as we feel like we have 13 years of fight ahead of us if we stay. It feels like admitting defeat, but we have such a sour taste in our mouths already. We are just hoping the remainder of this school year is smooth sailing.


Stachetastic

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Re: Talk to me about Autism
« Reply #58 on: November 20, 2016, 03:43:14 PM »
Laws change, and my kiddo is now 22. So I will not give school advice, excepting to ask if you got a book discussing your child's rights? Memorize it.

About reading and writing: it worked out better to give him disguised "lessons" at home. Basically, I took him to a book store. I had noticed he liked trains and so I let him pick out books with wonderful pictures, and of course I started him out at the train section. Some of those books were kind of expensive but I did not CARE! So, along with "C is for Caboose" and "Thomas the train" we got picture books with pictures of exploded engines and all of the parts labeled.

He loved having picture books in bed at night, and eventually he wanted me to read a bit of them. So I did.

He never DID read for his first grade teacher, as she was stuck on talking bunnies and other talking animals and as a country boy he knew bunnies did not talk and he said it was "stupid" . But I used to read to him and sound out the hard words for him, and by the time he was 12 he got a reading award for reading 3 Harry Potter books.

As for numbers, my son has a very CONCRETE view of life. I taught him basic arithmetic by using M&M"s. He thought the lessons were hard and he did not like them, even though after every formula he got to eat the candy. But it got done.

We are really pushing books around here lately. We've always tried to make them accessible and fun, but out little guy has been less than enthusiastic. He is, at age 4, finally coming around, and he definitely has his favorites. Also, dinosaurs are a long-standing favorite topic around our house. I love the M & M math idea! (Perhaps that would have helped me be a little more interested in the subject when I was in school!)

Kansas Terri

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Re: Talk to me about Autism
« Reply #59 on: November 22, 2016, 02:18:41 PM »
Don't push. Not for this.

Tempt. There should be some books used for lessons but most should be purely for fun. Because kids would rather play than study.

By all means teach reading and the sounds the letters make and how to sound out words, but his *FUN* books should ONLY be fun. Just as few kids will read a textbook for fun, you should not treat his fun books like text books. Or they will only be study material for him.

That is why I took my son to the used book stores and let him wander and pick out books he would NEVER read.  They had good pictures and when kids are small, that is all they care about. 9 months after I bought the adult train book he was interested in what the words said, and THAT is when we sat down together with that particular book, or one of his OTHER "toy" books. 


My son had some books like his train alphabet book E is for Engine, H is for Horn, etc that were read for learning purposes, but his fun books were not used for lessons. His fun books were, basically, toys he had picked out.

For example, my son had toy trains and he also had small trains that we practiced counting with. The purely TOY trains were the ones he played with 90% of the time! So let his fun books be fun books, and if you offer to read a fun book to him and he does not want to, then do something else. Because kids will spend more time with a toy than with study materials. If some of his books are seen as toys he will be more likely to use them in his free time!

Stachetastic

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Re: Talk to me about Autism
« Reply #60 on: November 30, 2016, 09:23:05 AM »
I'm finding this thread to be both therapeutic for me and a helpful timeline for my situation. Thanks again to all of you playing along at home.

We met with our attorney Monday and he had no knowledge of schools needing to approve open enrollment, but he immediately called our state representative, who said she would call me the next day (yesterday) to discuss. Her immediate reaction to his info was "of course, it's all about the money," so she sounded like she had some understanding of how these things work. Unfortunately, I have not yet heard from her.

I also just received a call from the facility completing our son's evaluation, and they are out of network. I'm currently on hold to determine how much this is going to cost us. I emailed the school last week and asked where to send the invoice, as this is being completed on the school's advisement. They were very quick to respond that it was merely a suggestion to give us, as parents, additional insight into our child. I called the advocate at the coalition and she stated if we did not get anything in writing, then the school can say whatever they want to get out of it. Not surprising, but we figured we didn't have anything to lose by at least hitting them up. So I am currently on the phone with the medical facility to find out how much the evaluation will cost, and just completely lost my shit, crying so hard I could barely get out his name and DOB to the 10th person I was transferred to.

I'm growing so weary of everything being so much harder than it needs to be. I just want what's best for my child, as does (almost) every other parent on this planet. These past few months have been a roller coaster--finishing work on our house so we can sell, searching for another house to purchase, keeping the rental vacant in case we don't find anything else in time, getting our hopes up that the state rep can pull some strings. So.Many.Emotions.


Psychstache

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Re: Talk to me about Autism
« Reply #61 on: November 30, 2016, 10:09:37 AM »
I'm finding this thread to be both therapeutic for me and a helpful timeline for my situation. Thanks again to all of you playing along at home.

We met with our attorney Monday and he had no knowledge of schools needing to approve open enrollment, but he immediately called our state representative, who said she would call me the next day (yesterday) to discuss. Her immediate reaction to his info was "of course, it's all about the money," so she sounded like she had some understanding of how these things work. Unfortunately, I have not yet heard from her.

I also just received a call from the facility completing our son's evaluation, and they are out of network. I'm currently on hold to determine how much this is going to cost us. I emailed the school last week and asked where to send the invoice, as this is being completed on the school's advisement. They were very quick to respond that it was merely a suggestion to give us, as parents, additional insight into our child. I called the advocate at the coalition and she stated if we did not get anything in writing, then the school can say whatever they want to get out of it. Not surprising, but we figured we didn't have anything to lose by at least hitting them up. So I am currently on the phone with the medical facility to find out how much the evaluation will cost, and just completely lost my shit, crying so hard I could barely get out his name and DOB to the 10th person I was transferred to.

I'm growing so weary of everything being so much harder than it needs to be. I just want what's best for my child, as does (almost) every other parent on this planet. These past few months have been a roller coaster--finishing work on our house so we can sell, searching for another house to purchase, keeping the rental vacant in case we don't find anything else in time, getting our hopes up that the state rep can pull some strings. So.Many.Emotions.
I'm sorry you are going through so much at one time.

RE: the school and there response, I would take the following steps:

1. I would give them a letter that states that, pursuant to their Child Find responsibilities outlined by IDEA, you are requesting an evaluation to determine if you child meets criteria as a student with a disability.

2. Provide the campus principal with a copy of the letter and request that it be timestamped with the days date. Get a copy that had the timestamp on it.

3. Include in your letter that you are requesting a Prior Written Notice of their response within 15 school days.

4. Request a copy of your procedural safeguards for your parental rights. This is another requirement they must fulfill when you are requesting an evaluation.

Hope that helps some (feel free to PM if you have specific questions about what I've written). Internet hugs.

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Stachetastic

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Re: Talk to me about Autism
« Reply #62 on: November 30, 2016, 10:16:20 AM »

I'm sorry you are going through so much at one time.

RE: the school and there response, I would take the following steps:

1. I would give them a letter that states that, pursuant to their Child Find responsibilities outlined by IDEA, you are requesting an evaluation to determine if you child meets criteria as a student with a disability.

2. Provide the campus principal with a copy of the letter and request that it be timestamped with the days date. Get a copy that had the timestamp on it.

3. Include in your letter that you are requesting a Prior Written Notice of their response within 15 school days.

4. Request a copy of your procedural safeguards for your parental rights. This is another requirement they must fulfill when you are requesting an evaluation.

Hope that helps some (feel free to PM if you have specific questions about what I've written). Internet hugs.

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Thanks, Psychstache! Wouldn't this have needed to be done prior to scheduling the eval? He has an assessment appt this Friday.

Psychstache

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Re: Talk to me about Autism
« Reply #63 on: November 30, 2016, 10:19:00 AM »

I'm sorry you are going through so much at one time.

RE: the school and there response, I would take the following steps:

1. I would give them a letter that states that, pursuant to their Child Find responsibilities outlined by IDEA, you are requesting an evaluation to determine if you child meets criteria as a student with a disability.

2. Provide the campus principal with a copy of the letter and request that it be timestamped with the days date. Get a copy that had the timestamp on it.

3. Include in your letter that you are requesting a Prior Written Notice of their response within 15 school days.

4. Request a copy of your procedural safeguards for your parental rights. This is another requirement they must fulfill when you are requesting an evaluation.

Hope that helps some (feel free to PM if you have specific questions about what I've written). Internet hugs.

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Thanks, Psychstache! Wouldn't this have needed to be done prior to scheduling the eval? He has an assessment appt this Friday.
Probably. I think I will still do it to make them sweat.

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Stachetastic

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Re: Talk to me about Autism
« Reply #64 on: November 30, 2016, 11:57:50 AM »
This may sound blunt/unkind, but i am going to say it anyway.  How much of this drama are you creating for yourself, unnecessarily?   Why are you continuing with testing at the recommendation of a school district you know will not support your child with the appropriate support, regardless of the testing results?  Why are you so stressed about the housing situation when you have a perfectly adequate, vacant rental you can move into any time? 

You want to reduce your stress?  Try the following steps:

1)  Cancel the evaluation.  If you need it for the new district, you still have time to get it before school starts.
 
2)  Move back to the empty rental.  Do the fixing up of the other house for sale when it is empty.  Look for a new house in the new district only after the other house is sold.  Give yourselves time to find the right house at the right price.  You have a place to live.  Yes, moving twice in short succession is a pain, but it will be fine. 

3)  Get DS signed up for school in the supportive district.   Show them whatever testing results you have to date and ask 1) if further testing is needed/advised and 2) for their recommendations of testing facilities that are in your network.  They may well say you don't need it at this point. 

Basically STOP FIGHTING TO STAY IN AN UNSUPPORTIVE DISTRICT! All signs point to this being a very difficult process should you choose to stay.  Do you want that kind of stress for yourself/your kid?  You'll find another house in a great neighborhood.  Stop clinging to the future you had imagined for yourselves that is not going to come to pass. 

Hope this bit of "tough love" is at least moderately helpful in terms of moving forward.

Excellent advice, and tough love is much appreciated. This bolded part is where I'm at with it at this hour. We were totally on board with moving, and were meeting with our atty on another matter when we decided to bring it up to him to make sure we had thought of everything. When he reached out to the state rep, I got my hopes up again, but really, this is the bottom line. I hate our district with the fire of a thousand suns. But I love our house. I've moved 34 times in my life and finally got to a place I feel settled. We got a screaming deal on our home and pay a $300 mortgage to live a few doors down from a home currently listed for $425k. It's sort of a unicorn of a house, and a deal we're not likely to replicate. BUT our son's education is top priority and that's that.

As for the evaluation, it honestly never occurred to me that we should cancel. Something to consider. Honestly, if his pediatrician would have suggested this before the school (rather than the other way around) we would have jumped on it then, as well. We assumed we would be on the hook for the cost from the get-go, just figured we didn't have anything to lose by approaching the school about it. Overall, I think this will be helpful to have. I was in tears earlier because I spoke to no less than 8 people and no one could even give me a ballpark estimate--I was asking them if it will be $500? $5000? (The answer: $2200ish)

Kansas Terri

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Re: Talk to me about Autism
« Reply #65 on: November 30, 2016, 12:43:18 PM »
"Thanks this is what I will do. He saw a neuropyscologist first and then was referred to a pediatric nuerologist. Now that he's 22 I need to see if that doctor can refer us to someone. I'm really hoping my nephew is willing to seek this help."
[/quote]

................................................
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You need to discuss this with him.

If he were my son, I would say "There are people out there who can teach you how to do (etc). Would you be interested in going? There is no writing involved". I have learned with the autistic spectrum you have to ask if there is something you need to know, as it rarely occurs to them to say anything unless you directly ask.

Of course I am guessing as to what help is available to his age group: you would need to find out for sure because if he IS autistic, then he will be very literal.

In the mean time, I can say that role-playing was a major part of what my son learned. A social situation was invented- such as what do you do when you accidently bump into some one- and the 2 of you practice saying "I 'm sorry" or "excuse me".

Also when to greet someone with "Hey, Dude" or with a hand shake. You actually have to SAY  that you can "Hey, Dude " a boy of 16, but you say Hello" when meeting a woman of 60.

There is no reason I can think of why you cannot talk him through the various social behaviors. As for not making eye contact, I once asked my son that. "It is too intense" was his reply. "It is too intense when you look people in the eye?" "Yes".
« Last Edit: November 30, 2016, 12:46:44 PM by Kansas Terri »

Kansas Terri

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Re: Talk to me about Autism
« Reply #66 on: November 30, 2016, 01:05:23 PM »
I'm finding this thread to be both therapeutic for me and a helpful timeline for my situation. Thanks again to all of you playing along at home.

We met with our attorney Monday and he had no knowledge of schools needing to approve open enrollment, but he immediately called our state representative, who said she would call me the next day (yesterday) to discuss. Her immediate reaction to his info was "of course, it's all about the money," so she sounded like she had some understanding of how these things work. Unfortunately, I have not yet heard from her.

I also just received a call from the facility completing our son's evaluation, and they are out of network. I'm currently on hold to determine how much this is going to cost us. I emailed the school last week and asked where to send the invoice, as this is being completed on the school's advisement. They were very quick to respond that it was merely a suggestion to give us, as parents, additional insight into our child. I called the advocate at the coalition and she stated if we did not get anything in writing, then the school can say whatever they want to get out of it. Not surprising, but we figured we didn't have anything to lose by at least hitting them up. So I am currently on the phone with the medical facility to find out how much the evaluation will cost, and just completely lost my shit, crying so hard I could barely get out his name and DOB to the 10th person I was transferred to.

I'm growing so weary of everything being so much harder than it needs to be. I just want what's best for my child, as does (almost) every other parent on this planet. These past few months have been a roller coaster--finishing work on our house so we can sell, searching for another house to purchase, keeping the rental vacant in case we don't find anything else in time, getting our hopes up that the state rep can pull some strings. So.Many.Emotions.
Am I correct that you had this group evaluate him at the school's request, and now they will not accept their findings? That they told you he should be evaluated by this group instead of telling you they would accept the evaluation of a similar group? *AND* that they now are saying the evaluation was for your benefit (which means they do not need to accept the findings if they do not want to, I suppose)

What a nasty piece of work. Seriously. I think that anybody that would do that to you would take out their irritation on your child, AND your child will not be capable of explaining what is going on when he is only a small child.

Move.

Also, EVERYBODY has a boss. I would put this in writing, with as may names and dates as you can think of, and (CHECK WITH YOUR LAWYER FIRST) send a note to (such and so's) boss. When you go up the ladder of command it will end up at your state legislature, who you say your lawyer has already called, but  I see no harm in keeping a record of who did what and said what and when, it is ammo and CYA. And if your lawyer gives the OK, send a copy to the boss of so-and-so, and the boss may not know what so-and-so has been doing.

Kansas Terri

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Re: Talk to me about Autism
« Reply #67 on: November 30, 2016, 01:07:54 PM »
I'm finding this thread to be both therapeutic for me and a helpful timeline for my situation. Thanks again to all of you playing along at home.

We met with our attorney Monday and he had no knowledge of schools needing to approve open enrollment, but he immediately called our state representative, who said she would call me the next day (yesterday) to discuss. Her immediate reaction to his info was "of course, it's all about the money," so she sounded like she had some understanding of how these things work. Unfortunately, I have not yet heard from her.

I also just received a call from the facility completing our son's evaluation, and they are out of network. I'm currently on hold to determine how much this is going to cost us. I emailed the school last week and asked where to send the invoice, as this is being completed on the school's advisement. They were very quick to respond that it was merely a suggestion to give us, as parents, additional insight into our child. I called the advocate at the coalition and she stated if we did not get anything in writing, then the school can say whatever they want to get out of it. Not surprising, but we figured we didn't have anything to lose by at least hitting them up. So I am currently on the phone with the medical facility to find out how much the evaluation will cost, and just completely lost my shit, crying so hard I could barely get out his name and DOB to the 10th person I was transferred to.

I'm growing so weary of everything being so much harder than it needs to be. I just want what's best for my child, as does (almost) every other parent on this planet. These past few months have been a roller coaster--finishing work on our house so we can sell, searching for another house to purchase, keeping the rental vacant in case we don't find anything else in time, getting our hopes up that the state rep can pull some strings. So.Many.Emotions.
Am I correct that you had this group evaluate him at the school's request, and now they will not accept their findings? That they told you he should be evaluated by this group instead of telling you they would accept the evaluation of a similar group? *AND* that they now are saying the evaluation was for your benefit (which means they do not need to accept the findings if they do not want to, I suppose)

What a nasty piece of work. Seriously. I think that anybody that would do that to you would take out their irritation on your child, AND your child will not be capable of explaining what is going on when he is only a small child.

Move. I think Ihamo is right. Get out.

Also, EVERYBODY has a boss. I would put this in writing, with as may names and dates as you can think of, and (CHECK WITH YOUR LAWYER FIRST) send a note to (such and so's) boss. When you go up the ladder of command it will end up at your state legislature, who you say your lawyer has already called, but  I see no harm in keeping a record of who did what and said what and when, it is ammo and CYA. And if your lawyer gives the OK, send a copy to the boss of so-and-so, and the boss may not know what so-and-so has been doing.

Stachetastic

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Re: Talk to me about Autism
« Reply #68 on: November 30, 2016, 01:32:33 PM »
Am I correct that you had this group evaluate him at the school's request, and now they will not accept their findings? That they told you he should be evaluated by this group instead of telling you they would accept the evaluation of a similar group? *AND* that they now are saying the evaluation was for your benefit (which means they do not need to accept the findings if they do not want to, I suppose)

What a nasty piece of work. Seriously. I think that anybody that would do that to you would take out their irritation on your child, AND your child will not be capable of explaining what is going on when he is only a small child.

Move.

Also, EVERYBODY has a boss. I would put this in writing, with as may names and dates as you can think of, and (CHECK WITH YOUR LAWYER FIRST) send a note to (such and so's) boss. When you go up the ladder of command it will end up at your state legislature, who you say your lawyer has already called, but  I see no harm in keeping a record of who did what and said what and when, it is ammo and CYA. And if your lawyer gives the OK, send a copy to the boss of so-and-so, and the boss may not know what so-and-so has been doing.

Actually, he has not had any evaluation completed aside from his initial preschool eval last year when his teacher started noticing his social delays (and we shared the same concerns). Those assessors suspected he was on the spectrum, but everyone at that point in time said "We will rule autism in/out immediately prior to kindergarten, no reason for a label at the preschool level." This school district advised us to have a medical eval completed in order to obtain a medical diagnosis, and insisted this was necessary to ensure services would continue into the elementary level without interruption. They stated they would have to start all over again at kindergarten in order to serve him without a medical diagnosis. He goes for his first assessment appointment for this medical eval on Friday. The district has not rejected any findings, they are simply back-peddling on their recommendation that this evaluation be completed at all.

No one has said anything to us about the possibility of an autism diagnosis without this formal evaluation, although other posters have mentioned they were able to get an educational diagnosis of autism. We are going to an autism support group this evening in a neighboring town (none in our town), and will be getting some more info regarding evaluation options in our area. Perhaps a diagnosis isn't necessary at all, but we do feel it may be beneficial to accessing services in our community.

Again, thank you all for your support and insight!
« Last Edit: November 30, 2016, 01:38:44 PM by Stachetastic »

Kansas Terri

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Re: Talk to me about Autism
« Reply #69 on: November 30, 2016, 02:29:31 PM »
Ah.

If the evaluator is not on your insurance, then cancel the appointment and get someone who *IS*.

Also, I would  send an e-mail to the school asking if he would be eligible for services if he is diagnosed on the spectrum. If nothing else that would get something in writing. The entire point is not to label him, but to get him the help he needs.

Names come and names go. The entire point of a diagnosis, in my opinion, is to get him eligible for the services they are able to offer. By the time he is 15 they will likely have different names for his condition, but that does not matter. What matters is, will this get him the extra classes on facial expressions and how to interact with his peer group? Will it get him a teacher's aid if he struggles in a class? Etc.

Stachetastic

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Re: Talk to me about Autism
« Reply #70 on: December 01, 2016, 07:58:29 AM »
I have canceled the evaluation we had scheduled and am now pursuing other sources. I have also spoken with my son's teacher, who stated they will be completing an evaluation in the Spring in preparation for elementary, and this evaluation will be sufficient--he will not need a medical diagnosis. We think it may be helpful to have one regardless, but at least we have the time to do some more research. I also pushed her on another speech eval to see if he qualifies for services for a social delay. (His vocab is very good, but we'd like to work on conversational/expressive skills more) Also, he has an ETR that we do not have in our possession, so we are missing a big piece of the puzzle. She is sending that to us today.

We attended a support group last night in a neighboring county, as our community does not offer one. The participants were so helpful and knowledgeable. Unfortunately, no one had any experience in our community or with our district, but they had a lot of insight into the system and even suggested an organization that provides diagnostics for free. They were surprised to learn of the open enrollment crap we've been dealing with, as this does not happen in their county.

We feel like between that group and this amazing group, we're starting to get our sea legs under us. We are gaining knowledge and, more importantly, confidence in asking questions and pushing for answers.

Kansas Terri

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Re: Talk to me about Autism
« Reply #71 on: December 01, 2016, 02:08:03 PM »
Once a week my son would have lunch with a few selected students and a teacher, with the intent of encouraging casual conversation. So, yes, it should be possible to get him help with conversational skills!

Stachetastic

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Re: Talk to me about Autism
« Reply #72 on: December 06, 2016, 09:54:27 AM »
A happy update!!!

My contact at our target district just called and said she spoke with the Director of Student Services, who stated if our son is in general ed (rather than a special unit), our home district has no say in open enrollment! We will need to apply in June and wait for approval from the new district based on space, etc. but my contact did not anticipate any issues. I suppose if we ran into problems at that point, we will have 2 months to pull something together in a pinch to move into the district if we had to. But this is promising!

I also did finally hear from our state rep's office yesterday, and the intern who called didn't have any knowledge of the open enrollment issue. He is looking into it and will call me back. I'm still looking forward to gathering more info from that end of things, just in case I need it in the future.

I ended up canceling the eval last week due to the financial end of things, and that same day got more info on a funding source that will pay for the entire eval (BCMH). Apparently the hospital who was to do the eval goes over all that at the appt. I had just canceled. (That we had waited 2 months for) So back onto the appt schedule we went, and they have in our file to go over the BCMH paperwork when we get there in February. They got an earful from me for that one. We were there in Oct. for an hour long screening appt and no one mentioned funding help then, none of the handful of people I spoke with on the phone last week mentioned it when I broke down crying trying to find out how much these things cost. This source is not income dependent, apparently everyone qualifies. I'm just glad we're not on the hook for $1200, so there's my silver lining. :)

Stachetastic

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Re: Talk to me about Autism
« Reply #73 on: December 06, 2016, 02:47:39 PM »
More good news: the state rep's office called me back and said they spoke with the state dept of education, who stated no school can inhibit movement of a student based on IEP status. The state rep intern then called the superintendent of our district, who agreed with this and said they would not stop a student from open enrolling. The intern did not disclose our names to the superintendent, but the sup said he will be speaking with his staff regarding this issue. They'll figure out soon enough who we are, this is a small community and we've spoken to a lot of people. Hopefully this means we won't have any issues going forward, but the intern encouraged me to call him if we do.

I'm so relieved this is coming together....I feel like I've stressed over this for nothing. But I'm thankful for all the support and guidance along the way.

Stachetastic

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Re: Talk to me about Autism
« Reply #74 on: June 22, 2017, 08:08:45 AM »
Well, it's been awhile since I updated, so I figured I take a minute here. Reading through this whole thread is helpful to me to see timelines, etc.

--We completed the evaluation process and his official diagnosis is Autism and ADHD
--We were accepted into our target district for open enrollment (yay!)
--This acceptance is conditional on them NOT providing an aide and revising his IEP to remove this service (BOO!)

I met with our support group and with the state Coalition advocate, and I think we're going to try out our home school for kindergarten, given they readily put aide services in his IEP and already have one hired for his classroom next year. (He does not need one-on-one services)

This is so NOT the direction we saw ourselves going, but fighting a district in which we are not residents is an uphill battle. We do still have a vacant house in our target district, but I'm not necessarily convinced they would be the right fit after all, since they are fighting us so hard on this and their admin is not on the same page with the building staff, it's a kind of a mess. I would be even more pissy if we picked up and moved and still dealt with the same BS. We have established ourselves as shit-stirrers in our home district, and have no issues with calling them out as needed. We don't really want to play this game with every district in our county.

Thanks again to everyone for your support and input! Maybe when he gets to college, we can sit back and relax a bit. HA!

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Re: Talk to me about Autism
« Reply #75 on: June 22, 2017, 08:42:25 AM »
Good stuff, Stachetastic!

Quote
We were there in Oct. for an hour long screening appt and no one mentioned funding help then, none of the handful of people I spoke with on the phone last week mentioned it when I broke down crying trying to find out how much these things cost.

The inability of agencies to grasp what a family needs -even when the needs are quite obvious- is unfortunately common. I have very similar stories.

I'm really glad that some things have sorted for you!!

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Re: Talk to me about Autism
« Reply #76 on: June 26, 2017, 08:51:19 AM »
Well, it's been awhile since I updated, so I figured I take a minute here. Reading through this whole thread is helpful to me to see timelines, etc.

--We completed the evaluation process and his official diagnosis is Autism and ADHD
--We were accepted into our target district for open enrollment (yay!)
--This acceptance is conditional on them NOT providing an aide and revising his IEP to remove this service (BOO!)

I met with our support group and with the state Coalition advocate, and I think we're going to try out our home school for kindergarten, given they readily put aide services in his IEP and already have one hired for his classroom next year. (He does not need one-on-one services)

This is so NOT the direction we saw ourselves going, but fighting a district in which we are not residents is an uphill battle. We do still have a vacant house in our target district, but I'm not necessarily convinced they would be the right fit after all, since they are fighting us so hard on this and their admin is not on the same page with the building staff, it's a kind of a mess. I would be even more pissy if we picked up and moved and still dealt with the same BS. We have established ourselves as shit-stirrers in our home district, and have no issues with calling them out as needed. We don't really want to play this game with every district in our county.

Thanks again to everyone for your support and input! Maybe when he gets to college, we can sit back and relax a bit. HA!

Congrats that everything worked out. I think you made a good choice, because the bolded portion above is the reddest of flags for constant battling back and forth.

Stachetastic

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Re: Talk to me about Autism
« Reply #77 on: June 26, 2017, 09:52:37 AM »
This is so NOT the direction we saw ourselves going, but fighting a district in which we are not residents is an uphill battle. We do still have a vacant house in our target district, but I'm not necessarily convinced they would be the right fit after all, since they are fighting us so hard on this and their admin is not on the same page with the building staff, it's a kind of a mess. I would be even more pissy if we picked up and moved and still dealt with the same BS. We have established ourselves as shit-stirrers in our home district, and have no issues with calling them out as needed. We don't really want to play this game with every district in our county.


Congrats that everything worked out. I think you made a good choice, because the bolded portion above is the reddest of flags for constant battling back and forth.

Thank you. I agree, this is what really had us concerned. The building staff/principal in that district really made us feel welcome and encouraged. Unfortunately, the administration felt otherwise and didn't tell the building staff, leaving us squarely in the middle. It was a confusing couple of weeks of back-and-forth, with the admin standing firm. Even with our home school footing the bill for an aide, the target district is refusing to hire one. This all indicates to us that they are not prioritizing students' needs, even when the solutions come at no cost to them. I'm glad we realized this early on!

 

Wow, a phone plan for fifteen bucks!