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[Innisfree]

Thanks, everyone.

[Terabith]

I'm guessing they wouldn't be willing to send her to a private placement without attempting a public one first.  Which sucks.  I'm sorry.  

[Innisfree]

Thanks

[PeterPan]

You have two separate issues there. One is how do you go about getting autism as your disabling condition on an IEP. Do you currently have or have you ever had in the past autism listed as her disabling condition on an IEP? And did the IEP expire? The IEP process may take less time if you have one and that is not too old. In general, it's 120 days. In general, if you want to speed it along you should get private evals, including an ADOS and any testing (language, etc.) that will show deficits. You'll need to prove she meets your state's legal definition of autism and that it affects her ability to access her education. As you say, not everyone with autism gets that diagnosis put as their disabling condition for their IEP. It depends on your state's definition, what evals you have to prove she meets the criteria in the legal definition, how picky they are about the law, etc.

So that's your first hurdle.

Then, yes, you'd probably have to enroll her, let her fail 1-2 semesters, and hope that the following year they'd pay for a private placement. 

My personal opinion, as someone with skewed experience, is that you're unlikely to get private placement if her support level is 1. That would be illogical. So updating your evals would tell you that right off the bat. Yes, we have an extensive autism school system here. In fact, I have my choice of 5-6 autism schools within a 1 hour drive. (For real!) Our state offers a disability scholarship, so anyone with autism as their disabling condition in their IEP can take that scholarship and go attend an autism school. That won't be full placement, because the scholarship happens to be the base tuition at those schools. Full placement would mean they completely service the IEP, meaning tuition, transportation, therapies, EVERYTHING.

Does your county have funding through their disability services? Would it be possible (financially) for you to enroll her without losing potentially a year or more fighting the school?

I don't know how easy it is to get full placement. I've heard stories of people who had the autism scholarship (which you give up your FAPE to take, btw) and went back to the ps and enrolled to try to fight for full placement. They ended up staying in the ps, which I took to mean they didn't get it. The ps doesn't give a rip about where your student will THRIVE, only whether they can SURVIVE the placement they can provide. It costs them way more to do full placement than to keep them in their school. I'm assuming they fight it quite hard. Full placement on my ds would be horrifically expensive. You'd be talking tuition, an aide, double speech therapy services, OT, transportation. I can't imagine it less than $50-80k a year. The ps only gets $34k a year for him from the state and they cough up $28k of that to our scholarship and pocket the rest as fees for the evals they do. So they are not very motivated to go cost themselves $$$$$$$$ kwim? No way. 

But our district is poor. In the big city, I hear some schools are really generous and some richer districts are generous. I think maybe talk with the prospective school and see how many students your ps has sent and see what they think on how likely you are to get it. I agree it's a hard situation. If you update your evals, maybe the psych can give IEP goals and recommendations that would make it easier to get to some middle ground, like aides, kwim?

[8filltheheart]

Our ds was incredibly difficult as a teen.  We were not able to get any supports through our state while he was a minor. At one pt, the advice we were given was to relinquish our parental rights bc then a judge could issue an order that would force the state to provide the services stipulated. Obviously there was no way we were going to do that! 

Getting them to pay for a program for autistics is probably going to be an uphill battle if your Dd functions at all in a classroom. When our ds was college age, we put him in a program for autistic college students.  All the other students were ps grads with varying functionality. Honestly, I was shocked by the outcomes of those students and the stories their parents told.  We had an autistic school in our area and even the kids who seemed low functioning were denied funding. The stories these parents told were of special ed classrooms where students were mostly herded, not educated. The academic level of every single student other than our ds was extremely low, even by remedial standards. It was shocking. Most were still on elementary level math.  ?  As an adult attempting to receive assistance through the DRS, he was shuffled around, given a case number, and they never had funding to actually give him assistance.

Ironically, that was in a state where I would have expected good services.  When we moved to a state where stereotypes would have made me suspect poor services, oh my, it was like receiving the royal treatment.  He had case workers (plural), fully paid for evals, job placement, job coach, private drivers ed instruction (though he refused to continue the classes), etc.  I don't know what the services for minors were like since he was an adult, but I definitely got a glimpse into very different worlds of services. That state was awesome and the other state was horrible.

[Lecka]

It can be district-by-district, and it can be teacher-by-teacher.  

 

[PeterPan]

Our district has a dragon lady for the SN coor. Unless you go in with everything to prove whatever you're asking for, you're toast. But I think that's because I state is exceptionally generous with the disability scholarships, making these funds huge scores. We literally have 5 autism schools, all full service, with yearbooks and music therapy and all the services, within a 1 hour drive of me. So the system is cracking down just to keep it affordable. What happens here is that people will enroll, use whatever scholarship they can get, and then use county disability funding to cover the rest. So you definitely want to see what your county will cover, even if your school won't agree to full placement. Some counties here are really generous. Ours is not (and can't afford to be), but some are. To get their best funding, you have to qualify for medicaid. 

We're going to tour another autism school next week. I've already been in several of them and this was on my list to hit. But for me, because we don't qualify under medicaid and because I wouldn't want to enroll him to fight for full placement, I would just use the scholarship to cover what it can and then eat the cost, sigh. But I get why that could be awful. It's not like we're WANTING to do that, mercy. We probably won't right now. I'm touring for informational purposes, so I know what's available. I think that's another strategy too, to tour now, while they're still in session, so you can see the flavor of the school and have time to think about how valuable their methods would be for your dc. 

Around here, some people do in-between things to stretch their money farther. Like even with the almost $30k scholarshp, it still goes quickly, kwim? So they'll use a provider who hires an IS (intervention specialist) and go do group academics with a small group of other kids on the spectrum for a morning, 1-2 days a week. Then the other days they do homework, do the elective stuff with parents, and get therapies. That's how they stretch their dollars. If you're going to be paying for this all yourself, you could look at combinations like that. Depends on what you can get with availability of workers and what your biggest (most pressing) problems are to work on. But yeah, getting math and LA in a group and then doing science and history at home along with the homework the rest of the week is a strategy people use around here.

[Innisfree]

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[Innisfree]

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[Lecka]

Honestly I think you are going to need to do more on your end than send one email.  The counselor is one person.  Maybe she is lousy.  If your daughter has a good teacher and program, it doesn’t matter at all that this counselor is lousy.

More likely the email is getting forwarded around to find who will answer.  

There is a huge amount of the left hand not knowing what the right hand is doing.  The staff who aren’t actually in certain programs or at IEP meetings have no idea what teachers are doing with their students in various programs.  They really don’t know. I have heard numerous times of parents being told certain things aren’t done, that are done, it’s just not widely known around the school building.  

It is a bit ridiculous, but don’t give up or get a bad impression yet.  

https://www.amazon.com/Comprehensive-Planning-Individuals-Asperger-Disabilities/dp/1934575038  I’m linking, this is what was used for some students in our old district.  

Can you find out anything from your service providers or other parents?  

I don’t find parents totally helpful because sometimes our kids are different or our thoughts are different..... but they might know things like who to talk to at the school.  

[Innisfree]

Lecka, you're right about the school, of course. I'm not seriously fed up with them or anything, that's minor.

We don't actually have any services, so no providers. Because, no funding. I know one parent with kids on the spectrum, but those kids are adopted and level 3, so for them, Medicaid covers everything.

Editing to add that also, those kids' school experience is utterly different. They are sufficiently disabled that they are in special ed classrooms.

[PeterPan]

I was told language is what differentiates ASD1 from 2. So it can be behaviors, but really language is where it's at. That can be narrative language, metalinguistics/semantics, whatever. 

That's really hard when you want something and can't make it happen, sigh. I think maybe in approaching the school you would want to have her psych eval privately updated, along with language testing (TNL, CELF Metalinguistics, etc.) to see what her support level should be. Maybe 1 is it, sigh. And you could talk with the autism school and flat out ask what parameters usually result in the kids getting full placement in your area. They would be in the best position to know.

Yes, it sounds like she's working really hard to hold it together! Is she getting any Zones of Regulation or services with a behaviorist?

When I work with our providers, they usually have a fresh perspective on how to stretch things. LIke if she can work ok with you, then they're going to say hey let's work on getting some independent work going, kwim? They're going to stretch her. And it's not that you can't do those things, but maybe you're so in the moment and you don't have anyone suggesting them. So then that's a way to handle things, an in-between step, that you can get inhome help (a behaviorist, an IS) that you consult with or who does hours and they say hey let's bring in this strategy, let's stretch and do this or that.

That's really good that you got her qualified with your county board of disabilities!!

[PeterPan]

I keep mentioning in-between steps, like bringing in a BCBA or hiring an intervention specialist (which you can do!), because it would cost less but maybe help. Like around here an IS who teaches all day the ps and comes to your house in the evening will only be around $30 an hour. Seriously. And if they're worth their salt, they'll be able to come in, help you make a plan, maybe work in 2 hour chunks a couple times a week, help you formulate some plans and things to stretch her. 

RDI is another way to build compliance, by working on non-verbals. I know it sounds hokey, but again I'm giving you a $100 once a month thing that might make a difference, vs. the $30k+ a year thing you can't make happen, kwim? 

So like if you got an IS for 2-4 hours a week, you might be at under $500 a month. It's still money, but it's not $30-40k for a year. That would be $3k a month to send her to the autism school. Makes hiring the IS a deal. They could help with structure, with routine, and they can come in fresh.

I think coming in really hard with ABA and compliance work can increase opposition. Some kids really need to be on-board and aren't going to ABA their way there. RDI seems to be gentler and strangely compelling to my ds. And of course just having someone fresh to give you a break or give you some new strategies. 

My ds has apraxia, so we've poured all of his scholarship all these years into speech, mostly speech. It was worth it, but it means we couldn't make a school happen either. You don't get to do it ALL. So that's where you're like ok I need some in-between strategies if a school can't happen. 

And it could be you just tap her college fund and make the school happen. But nuts, my kid didn't have a college fund big enough to fund an autism school, mercy. So then you need the in-between options, sigh.

[Innisfree]

PeterPan, thank you for the names of those tests. That's a good idea, and something we can do.

Zones of Regulation makes her mad. Which is probably because it is hard. She gets it all on a superficial level, gets annoyed, doesn't want to engage with it. Deeper down, she needs it. I couldn't get our BCBA to keep going with it, back when we had funding for ABA. No hope of a behaviorist now, the local agencies require a level of services which is far beyond what we can pay for privately.

Yes, I asked the autism school I toured the other day, and they were a bit coy about giving any definite information. It sounds like it may be that some localities have just decided to send kids there, rather than investing in the staffing locally. They said often it was all very amicable, everyone agrees that was what was best for the student, but sometimes it was a fight. They had not dealt with our county before.

[Lecka]

I know you know with the counselor, but I have frustrations that I have to deal with, that are not part of my son’s school experience.  I think it’s important to separate them mentally.

I have seen it go both ways.

I have seen things where people are great with parents and very responsive to parents, but I don’t think they are doing as much with the kids.

Then I have seen things where they are great with the kids but just not that easy/responsive as far as parents.  

 

[8filltheheart]

Fwiw, we have found adult resources more accessible than minors.  I would recommend contacting your local Dept of Rehabilitative Services and ask any questions you have about adult services.

[Innisfree]

On 5/11/2018 at 8:34 AM, PeterPan said:

 

So like if you got an IS for 2-4 hours a week, you might be at under $500 a month. It's still money, but it's not $30-40k for a year. That would be $3k a month to send her to the autism school. Makes hiring the IS a deal. 

I think we're dealing with different cost-of-living environments. ?

[Innisfree]

I should go back to Zones of Regulation myself. I do know all these materials, I can use them. I just got hopeful, seeing a school where they can do all this stuff, you know? I would love to be able to send her to a school where they can do what she needs. But we may need to just keep plugging along. Anyway, we have all next year to see what our options really are. This is not a one-week decision, this is a spend-the-year-looking-at-options decision. I appreciate hearing everyone's ideas.

[PeterPan]

Wow, you must be in a very high COL area, oy!! 

Yes, kids can get really agitated and overwhelmed when working on hard things like the ST stuff. Our behaviorist found what was calming to ds (motion, swinging) and had him do that while she would talk with him. The OT gets him in motion and does a lot kinesthetically, because that calms him. Any chance of an OT to work on it? You're correct though that the gap is between the instruction and the carryover/implementation. The dc himself probably won't apply it very readily, even when the instruction is good, because that's the nature of autism.

Had you asked about genetics in another thread? I'm getting people mixed up. That was going to be my other suggestion, to do genetics and see if you could get some stuff calmed down enough to maybe make her easier to work with. I did talk with our ped about hospital genetics testing with autism, and he said they do a microarray (whatever that is) and look at bands and patterns, not specific, nitty gritty things like I'm doing with my $69 23andme results. So totally different purposes. I'm targeting, and they're looking for patterns and predictions.

[Lecka]

What has been so frustrating for me is sometimes they just will not or cannot say ahead of time what they will do.

Two different times, for fairly significant kinds of things, I have been told some version of “we’ll work with him and get to know him for about two months and then we’ll know what we want to do.”  Because blah blah they need to try things and they need to see how he does and how he responds to various things, and they need to give him time to adjust to a new place and get used to them and the new routine.

It’s really hard.  

[Innisfree]

On 5/11/2018 at 9:22 AM, PeterPan said:

Wow, you must be in a very high COL area, oy!! 

Yes, kids can get really agitated and overwhelmed when working on hard things like the ST stuff. Our behaviorist found what was calming to ds (motion, swinging) and had him do that while she would talk with him. The OT gets him in motion and does a lot kinesthetically, because that calms him. Any chance of an OT to work on it? You're correct though that the gap is between the instruction and the carryover/implementation. The dc himself probably won't apply it very readily, even when the instruction is good, because that's the nature of autism.

Had you asked about genetics in another thread? I'm getting people mixed up. That was going to be my other suggestion, to do genetics and see if you could get some stuff calmed down enough to maybe make her easier to work with. I did talk with our ped about hospital genetics testing with autism, and he said they do a microarray (whatever that is) and look at bands and patterns, not specific, nitty gritty things like I'm doing with my $69 23andme results. So totally different purposes. I'm targeting, and they're looking for patterns and predictio

[Terabith]

I really do understand.  We don't have a solid diagnosis on my younger one, but this summer we visited Brehm Preparatory School in Illinois, and the psychologist there talked to her for 40 minutes and GOT her in a way nobody else has EVER come close to getting.  The whole place was magical.  I wish so badly I could send her there; I mean, they do complex 2e kids like her.  But it's $70,000 a year for boarding school, and $40,000 for day.  I was all, "Maybe we could move and I could get a job to fund it," but everyone else is pretty solidly opposed to moving, so I don't think that's likely to happen.  But man.  She would THRIVE there!  I wish we could make it happen, but it's just stupidly expensive.

[Innisfree]

30 minutes ago, Terabith said:

I really do understand.  We don't have a solid diagnosis on my younger one, but this summer we visited Brehm Preparatory School in Illinois, and the psychologist there talked to her for 40 minutes and GOT her in a way nobody else has EVER come close to getting.  The whole place was magical.  I wish so badly I could send her there; I mean, they do complex 2e kids like her.  But it's $70,000 a year for boarding school, and $40,000 for day.  I was all, "Maybe we could move and I could get a job to fund it," but everyone else is pretty solidly opposed to moving, so I don't think that's likely to happen.  But man.  She would THRIVE there!  I wish we could make it happen, but it's just stupidly expensive.

Hugs. It stinks, doesn't it?

[Kanin]

If I were you, I'd keep touring autism schools in your area. At my private school for kids with learning disabilities, we have potential students do a 3-day visit. After that, the faculty meets and either decide to recommend admission, or not. The admissions person then meets with the parents and talks about everything. In my experience, parents can get a LOT just out of that conversation, even if the child doesn't enroll. The application fee is irritating, but if it's a good school and you think their people would spend a lot of time with you, it could be worth it. They also might be able to give you some good leads on what to do on your own.