How's it going?

[Storygirl]

For IEP purposes in our state, transition planning starts at age 14, no matter what grade the student is in.

In our case, transition planning has been... interesting. When we were moving, we chose our district not only because of the classes and support that they had to offer for students with LD, but also because we got the best answers to our transition planning questions. Our transition coordinator (who happens to be the district special education head) has taken a multi-pronged approach that includes connecting us with state and county services that offer transition help. Those connections have become really important to us and have opened up opportunities.

However, what is in DS's IEP for transition planning is weak, in my opinion. For this year, it is basically for his case manager to help him think about what vocational programs he is interested in visiting in the fall of 10th grade. The problem is that vocational school is probably not his path. And the second problem is that his case manager has taken a very minimal approach to that, and the "help" he has offered is just a questionnaire asking what programs DS likes from the list of offerings.

I think that schools probably emphasize vocational training for their IEP students who may not go to college, because it makes a lot of sense for them to learn job skills that can lead to employment, and what better place? For students for whom vocational school is not a great fit, I think the path becomes harder for everyone to figure out.

I have a lot of transition questions to bring up at our next IEP meeting, for sure (which is not until the fall). My point, I think, is that even really good transition coordinators (and I think our district has a really good one) are going to present ideas from a limited set of options that they already have in place in their schools. It's hard to get them to think out of the box for our kids who don't fit in the box.

DS16 is in 9th grade this year. Not because we grade adjusted, but because I considered him K at age 6 (we were homeschooling then, and I was teaching him before age 6, but that is when we set his grade level). 9th grade is a great level for him, and he does not seem too old for it. But he is slight of stature, and he is immature for his age, so he does not read at all like a kid who is too old for his class.

My other two younger kids also started K at 6, so they are also old for their grades. And it's been fine. I don't regret those choices.

I did do a grade adjustment for DD18 when she was in first/second grade, because I had started thinking of her as K at age 4, and I decided that I was overly ambitious about that, and that she should be with same age peers, grade wise. And I don't regret that adjustment.

So I've made a few different choices in this regard. It really is individual for each kid. But I think that it might be better to consider a grade adjustment around 8th grade, in your case. Those middle school years can show a lot of growth, and you might have a different idea about his level when he is right at the boundary of starting high school.

Honestly, doing 4th grade level work in 5th grade probably is not a strong enough indicator that his grade level should be dropped. There is such a wide variation in ability within typical schoolkids at that age for academics that if he were enrolled in public school, your son would likely not be grade adjusted.

 

 

[Storygirl]

My other son's academics took a big jump during his seventh grade year, so that for this year, in 8th grade, he was moved up into advanced level classes, and he skipped 8th grade math and took algebra (he was originally meant to take 8th grade math, and we appealed it).

Honestly, I would not have predicted that at all.

Now, he does not have LDs, but still. His leap forward academically was unpredictable to me.

 

[Storygirl]

Also, I agree with thinking forward, not just to the level of academic work that your son is capable of now, but to what age he will be as a senior.

For some students, still being in school at age 19 is a good and right choice.

For some students, those last years of school might be a battle, especially if you are homeschooling. Do you envision him being a willing worker with you at age 18 and 19? If not, perhaps being done with formal academics on the earlier end might be a better end point.

Or actually not really an end point, but just the point at which he moves on to the next phase. Which could still be vocational school, even if started at age 18 after 12th grade is completed (this is allowed with an IEP). Or he could forgo getting the diploma after 12th grade and spend an extra year doing an internship or work program that falls under the public school domain, if this could be worked out with your school system. Because having "career ready credentials" is one of the possible paths to a diploma under the newly revised graduation system, I think more opportunities may be available in years to come than what is available now (at least, I hope so).

I also think Project Search looks like a great option.

[Lecka]

The Narnia study sounds cool!  My sister did one with her daughters, and they loved it.

Glad there were no surprises at the hospital!

[Crimson Wife]

We did a grade adjustment (3rd to a repeat of 2nd) for my SN child but it was after discovering through a bone age scan that there is a 15 month discrepancy between her chronological age and her physiological one. So we all agreed that it didn't make sense to hold her to the expectations of 3rd grade when at the time her body "thought" it was only 7 y.o. Her teacher ran a Woodcock-Johnson Achievement Test and did 2 sets of norms, one for 3rd and one for 2nd. For the verbal subtests, she was off the charts low on both sets of norms. But for math, she actually moved into the normal range (albeit the low side). The grade adjustment didn't change the IEP goals because those were all language/speech/reading related to begin with.

The endocrinologist projects an adult height for my DD of 5'0" (I'm 5'3" and my older DD is 5'4"). So I'm not at all worried about her being bigger than the other kids. In fact, after the grade adjustment she went from being one of the smallest in her class to more in the middle.

[Lecka]

My son has turned out to be average-sized for his age so far!  But he was stocky when he was younger.  He still has a stocky build but it is less pronounced.  
 

Right now his twin sister is about 5 inches taller than he is, she has had a growth spurt and he hasn’t.

Oh yeah, we also thought it would be awkward to have them in different grades.  My husband was very concerned it would harm his self-esteem and he was held back so he has a personal experience with it.  

[Lecka]

The thing is I have seen some kids do an extra year of pre-school or repeat K, and then they fit in very well with their peer group.  I think it is good to do then.  I think it does often work out.  

[PeterPan]

3 hours ago, Lecka said:

 I think he is wanting greater independence like he will have in middle school.

On *that* I'm with you.

3 hours ago, Lecka said:

At the IEP meeting where we discussed it, there was also a feeling that while we could go either way with pros and cons on both sides, that it can be nice to have more time at the older end.

Ok. See they hadn't really said that, and it sounded like they were just pushing him through.

4 hours ago, kbutton said:

kids generally start getting uncooperative at a certain age.

Yeah. But if we were saying do transition/work at 16 and cutting into academics a year or two earlier than we'd *have* to, that would be bad. But I could definitely see that happening at some point.

3 hours ago, Lecka said:

it’s extremely demoralizing to be held back and still have a hard time.

Yes, and I agree it would be demoralizing for him to get to the end and feel trapped due to academics. I just don't want him PUSHED out earlier than he needs to be. He's finally getting easier to work with and I need to work with him, sigh.

3 hours ago, Storygirl said:

For students for whom vocational school is not a great fit, I think the path becomes harder for everyone to figure out.

That makes a lot of sense and explains the lengths our behaviorist was going to with clients. She was encouraging us with alternative paths, like starting a business for him.

3 hours ago, Storygirl said:

Honestly, doing 4th grade level work in 5th grade probably is not a strong enough indicator that his grade level should be dropped. There is such a wide variation in ability within typical schoolkids at that age for academics that if he were enrolled in public school, your son would likely not be grade adjusted.

I hadn't thought of it that way, but you're probably right.

3 hours ago, Storygirl said:

I think that it might be better to consider a grade adjustment around 8th grade, in your case. Those middle school years can show a lot of growth, and you might have a different idea about his level when he is right at the boundary of starting high school.

Ok, that seems reasonable.

3 hours ago, Storygirl said:

My other son's academics took a big jump during his seventh grade year, so that for this year, in 8th grade, he was moved up into advanced level classes, and he skipped 8th grade math and took algebra (he was originally meant to take 8th grade math, and we appealed it).

Honestly, I would not have predicted that at all.

Now, he does not have LDs, but still. His leap forward academically was unpredictable to me.

 

Oh that's kinda cool! And ds is such a wild card, anything could happen. He has this kind of wildly extreme potential. I didn't know 7th was a leap time, but I'll hang for that. And then if they spurt in 7th, it makes sense why things would be more clear by the end of 8th.

2 hours ago, Storygirl said:

Do you envision him being a willing worker with you at age 18 and 19?

I really don't know. He has been later on everything, later in a way where he doesn't notice stuff, doesn't realize. So pushing him into work too soon would be like shoving a bird out of a nest before it's ready to flap. So I have zero clue. I can say if he's graduated without a plan and moving into something he'll sit around and make nothing happen. Well we'll see, but as of right now there are a lot of gaps there with initiation and ability to plan out steps. I told him he could make a ham wrap with leftover easter ham, and he couldn't figure out the steps. I kid you not. He had globs of mustard on, the pickle slices sideways. It was crazy. Gifted IQ. 

And the other thing is that our work together perks him up, scratches his itch. So he doesn't usually complain, because it's usually engaging and making him think in a way that makes him feel better. Like this writing push right now is AWESOME. He comes alive being asked to think harder. Today he was supposed to take the perspective of his shoes and write details about a day in their lives. We did the graphic organizer, and he's like BOOTS DON'T TALK. LOL It was so funny. So I'm like fine, take a break, and we come back to it and the shock of being asked to take the perspective of boots was over and he could grapple with it.

So I don't think he's going to buck too soon. I could be wrong. He just functions really young. 

2 hours ago, CuriousMomof3 said:

but they're all sixth graders.  And there is room in the sixth grade curriculum for all of them to learn and grow and succeed.  

That makes sense, and yes that's where the ps is coming from.  

2 hours ago, CuriousMomof3 said:

I do think that it sounds like you're doing a great job by your son, and you do know what is good for him and when to push him.  I don't think you need to be able to get him through a specific text book for him to "be" a sixth grader.  If the book that has a four on the cover meets his needs, then use it!   

Thank you! What I'm concerned about is getting to say 8th and getting pressure to start "high school" when it will be clear he's not even CLOSE to high school. And I think he WILL GET THERE. Not in perfect fashion, but in some fashion. And their answer on that was still the big flip, it's called high school when he starts high school work, blah blah. 

The flip side, is if he IS compliant and learning I can keep him on an IEP and in the education system. If the services through providers are more valuable than transition services, I can continue those services. Just depends which is more valuable basically.

2 hours ago, CuriousMomof3 said:

Is your school system limiting you to 5th grade materials?  I love your description of how he moves through different levels.   I think that's what many kids with disabilities need.   If the school district is preventing that, or preventing it in the parts of his program they have control of, then that's a different issue, and I could offer advice on that too.  

So legally I give up my FAPE and take the scholarship that he qualifies for by having an updated IEP. So I work integrally with the team to help write the goals, I sign off on them, and I am going to get asked how they're going a year later. So if I completely flop, it's egg foo young on me, kwim? But technically they decide nothing, I teach as I want. I comply with state homeschool law, and that has methods (testing or portfolio review or...). So as long as I comply with the law, the IEP is only an a statement of where he is and next steps, not a censure. I use what I want, as I want.

Usually what I do is work with them to write new goals, then I put them aside and go do my own thing. Then I come back 6 or 9 months later because I want to see how many we've hit. So even when they're my goals, haha, I'm not like slavish. Like this year I picked one goal (waiting) and I was like fine, let's nail this. So some move up, some down, some get stalled out. 

So no more it's about egg foo young or just making sure I'm being diligent.

2 hours ago, CuriousMomof3 said:

unevenness.  There are probably some things that are really hard (inference?) and somethings that come easily (background knowledge in certain topics?).  He's probably going to benefit from a highly customized program that pulls from materials that is described with multiple grade levels. for the rest of his education.  

That is spot on. That might be why adjusting doesn't make so much sense. I used to tell him to tell people he was in college. He's just ALL OVER THE PLACE. He'll listen to Bad Kitty and Great Courses in the same week. Yes big spread on things like background knowledge vs. inferences. Hard math is easy and easy math is hard.

I think you make a good point too, that if he were enrolled in an autism school, what grade would they put him in? Even they don't. They flex and do several grades together and they do groups for math and LA to get people closer.

And yes, totally customized instruction. That's why that intervention specialist was bugging me (one reason on the list), because she wasn't bringing that. I wanted to see something intriguing, something custom. I was sad today we didn't have a slot with her, just for the positive momentum and conversation break, but we got somewhere good with our work together and got a lot done. I like what he's writing with this and the little clicks he's having and how spiraled it is. It's amazing *how much* he literally doesn't get. Like the instructions will say write a paragraph with the vocabulary and he's trying to get it all done in one sentence and is frustrated! LOL I'm like bud, do you understand what a paragraph is??? LOL And workbooks are so good on tedious stuff like punctuation. They weave it in so nicely.

3 hours ago, CuriousMomof3 said:

even if you look at the options that are available now, you're probably missing some.  There are probably kids in your district who spend 6 years in high school doing traditional high school academics, and then a shorter period of time at the career center.  There may be programs where kids can take classes at  the community college or technical college with support from the district.

Yup, that's what I can't quite see right now, whether *all* of the options might be open to him. I still don't see why it's better to have 6 years of high school (which makes for a really ugly, not college friendly, transcript) vs. extra time in junior high and a shorter high school. But to push and say we have to call it "high school" and have to keep track of units and make a transcript for 6 years, what a pain in the BUTT. That doesn't make sense to me as a homeschooler at all. I'd rather have total freedom to do junior high longer, be whimsical, then retroactively rebadge some years and make units and graduate him. Much easier to do that. But to feel pressured to make it be high school or have hours like high school and keep going that long, that's INSANE. That is not who he is. This is NOT a dc who is going to fit into a high school mold AT ALL. Not ever. 

That's why I keep pushing back, because it's very clear than any attempt at anything high school is going to be a COMPLETE FLOP with him. But more likely, we're gonna lick and promise it, do some math, read some things together, argue, write, and make up units about whatever he's doing and into. And it's all going to be hindsight and just done. Like ok we're done, let's work backwards and make a transcript. But I can't do 6 years and he can't. No way. 

Fwiw, I'm a little more in the loop on the vocational stuff in our area than I'm saying. 

3 hours ago, CuriousMomof3 said:

Why would we expect them to show us the right employment path for them with less time, less experiences, than their typical peers? 

I know, that's why I wanted the grade adjustment, lol. To me, pushing forward too much is pushing them into the workforce before they're done baking. If I don't graduate him, he's eligible for state-funded dual-enrollment. And transition services. And the scholarship. And the scholarship means services for social, academics, anything. So no matter what, unless he's really ready to move on, his safest place is not graduated. And as long as he's still cool with our work style, still engaged, still progressing, I don't see a need to end it prematurely by letting the school system get their hands in and saying it has to end or that I have to keep a transcript prematurely. 

I've been looking at the progression Timberdoodle is using for science, because I think some of their stuff is very sensible. Not that we're doing all of it, but there's a logic to it. And I've been sort of benchmarking, like ok when we're doing this, then we're functioning at x grade level in their system. So to me, that jump to junior high materials, that leap you expect to see from 6th to 7th, would be kind of a big deal. If I'm not seeing that leap happening and he's still functioning like a 6th grader, not a 7th, developmentally, then I don't see calling him a 7th grader. And I don't see calling him a high schooler if he's functioning like a 7th or 8th grader. 

Not all kids buck. I've talked with others who did 5 years of high school, and ds has the sort of personality, at least so far, that kind of trusts and enjoys working with me. I think he'll keep working. We'll see, but that's what I think. And part of it will be that "working" will be stuff he wants to do anyway (learning about this or that), so will scratch his itch and not be bucked. That's what I think. I could be wrong, but that's what I think.

2 hours ago, CuriousMomof3 said:

When he feels bad, they play chess

Too bad the intervention specialist didn't offer to play chess with him. I might have kept her. Instead she got on and asked HIM what "online game" they could play together. So he starts thinking about minecraft again and harping on that, ugh. But yeah, she could have gotten paid $80 an hour to play chess. Just not to bring insurrection. So old.

Well thanks ladies. I appreciate knowing where the school is coming from and I'll keep thinking. There's probably functionally little difference, no matter what we call him, because I'm going to teach him where he is and do what I want to do with him. He's JUST getting the language to explore the world, and I'm not going to have that cut off by "high school" or transcript pressures. And nuts, we may get to a point where he would need an IEP for school but isn't getting services privately to bother with all the driving for the scholarship. I don't know. In that case, a lot won't matter, we'll just do our thing. So we'll just see. And I think our coor may have changed, which may change the conversation/tone too.

[PeterPan]

1 hour ago, Crimson Wife said:

We did a grade adjustment (3rd to a repeat of 2nd) for my SN child but it was after discovering through a bone age scan that there is a 15 month discrepancy between her chronological age and her physiological one. So we all agreed that it didn't make sense to hold her to the expectations of 3rd grade when at the time her body "thought" it was only 7 y.o. Her teacher ran a Woodcock-Johnson Achievement Test and did 2 sets of norms, one for 3rd and one for 2nd. For the verbal subtests, she was off the charts low on both sets of norms. But for math, she actually moved into the normal range (albeit the low side). The grade adjustment didn't change the IEP goals because those were all language/speech/reading related to begin with.

The endocrinologist projects an adult height for my DD of 5'0" (I'm 5'3" and my older DD is 5'4"). So I'm not at all worried about her being bigger than the other kids. In fact, after the grade adjustment she went from being one of the smallest in her class to more in the middle.

And see my ds is already on the older side of his grade, as Lecka points out, and moderately tall. Not flaming, but 50th-75th percentile depending on the day. 

 I think the youth group will matter too. Getting him out of the Sunday School elementary sequence and into the more independent, fish school environment of the junior high would be a big deal. 

[kbutton]

25 minutes ago, PeterPan said:

Yes, and I agree it would be demoralizing for him to get to the end and feel trapped due to academics. I just don't want him PUSHED out earlier than he needs to be. He's finally getting easier to work with and I need to work with him, sigh.

As long as he qualifies for an IEP, you just defer a diploma, from what I understand. You might have to be pushy, but that's how it's done. 

[Lecka]

Peter Pan — we expect my son to be in public school special Ed of some kind until he ages out.

There are more options and programs for that age group.

He might be done at high school but still be in a school program of some kind.

Anyway — with him already old-for-his-grade we can have an extra year there instead of an extra year of elementary school.  Aka an extra year in elementary school could take a year away from him he needs when he is older to still be doing special Ed stuff.  
 

At the IEP meeting there was a feeling he would benefit more with the time later.  

And especially with him possibly being bigger than other kids.  Really both places we have lived there have been kids who have repeated grades younger and then stood out as being much larger.  That would possibly be his situation.  He would never be small in a group.  I know it is shallow but I think the size thing makes a big difference.  

 

[WoolC]

Sorry, this is a bit off topic from the conversation, but CuriousMomof3 you’re clearly very knowledgeable on the subject and I found your description of special needs kids and changes over the teenage years very helpful.  My son is 10 with ASD2, high anxiety/avoidant profile, which has made working with outside therapists practically impossible.  We’ve tried several different therapists (OT, RDI, play therapy) but he outright refuses to work with them and they’ve eventually dismissed him or referred us on to someone else and the pattern repeats.  I’ve homeschooled him since kindergarten and we haven’t  done an evaluation with the school system, no IEP, etc.  He was evaluated by a psychiatrist and confirmed by the TEACHH clinic at Chapel Hill.  I’ve always just tried to meet him where he’s at and keep making progress.  I’m definitely shooting in the dark sometimes, but I read around these boards and use various resources from AAPC, Social Thinking, Story Grammar Marker and see what works.

I give all of that background to ask, would there be any benefit in going through the school and doing an IEP?  Especially if ds is so resistant to working with anyone outside of our family?  Is it necessary for a paper trail or only if you want to access funds?  Will we need it to get access to career transition help?  I really like having the freedom to work outside of the system and do what works, but obviously I don’t want ds to miss out if an IEP could actually help.  Thanks for any info you can give!

[PeterPan]

50 minutes ago, WoolC said:

would there be any benefit in going through the school and doing an IEP?

Our state has a disability scholarship you access with an IEP so that's why people here are doing it. And although federal law requires them to *identify* disabilities, actually writing the IEP is a separate piece, more billing hours for them, meaning they're not going to do it unless legally compelled. So no, unless your state law requires them to write an IEP or you're enrolling, you'll get evals but no 504/IEP. 

50 minutes ago, WoolC said:

ASD2, high anxiety/avoidant profile, which has made working with outside therapists practically impossible.

Bingo. That's us. Meds are amazing. I got him maybe 80% of the way with genetics and supplements but that was just making him calm enough for me to work with him. Starting him with a new person was still 3 months of drama and anxiety, danger if the person doesn't know what they're doing, etc.

Have you thought about seeing a pdoc? Or running genetics plus a pdoc? To me, the genetics are what predicts why certain meds are necessary or others will backfire. The one we're using now is not perfect, but we're making it work for the time being. We had tried another one on occasions a few years ago that had high side effects (left him a zombie) and made him dangerous as it was methyl donor. So there's definitely risk, but it's mangageable. And for my ds, his anxiety is not like oh just think it away. It's visceral and shutting doors. Actually it was leaving him locked behind doors. You get the med up, and he comes out.

I'm not saying it's perfect, just that there's potential. The anxiety is definitely the elephant in the room. If I could figure out a way to get farther with supplements, I would, sigh. There's another gene (MAO A) I just started learning about and there's a med that I think targets it. The med we're using now hits HT1a, a different point in the food chain. The supplements are hitting 5HTP. Those sound similar for a reason. Different points in the process. 

I also think some therapists are just really unskillful, sure. So it's not like we can medicate our dc to the point where they can work with just ANYONE. His IQ, his whole bent, is way too whatever for that. I mean, some of these "professionals" are just, well they expect kids with a much higher IQ than theirs to overlook everything or not to notice or complain or have an opinion. And a masters doesn't mean someone is ready to keep up with him, sigh. The person still matters and sometimes it's hard to find that person. But getting the right person matters too, and unfortunately for our complex kids, that right person can be harder to find. 

We're doing really well with teletherapies right now. They give us access to better people and more choice. They eliminate transitions. They allow him to have flex for what tools he has. Now you lose environmental control, yes. But some of it is really good.

A lot of professionals will turn my ds down, because they know high IQ, ASD2, SLDs, all over the place for skills, that is not run of the mill. I had a BCBA say upfront his master's level intervention specialist wouldn't know what to do with him. Another IS didn't and wanted to play online games with him. This is not so easy or run of the mill or obvious to work with. He's going to outthink people and run circles around them and give them a hard time. They have to bring energy and can't be controlling. Some people are very controlling in their approach, and that consistently backfires with ds. But he's hard to work with, tiring. Sometimes he's a real JOY and they'll say that. But sometimes he's just tiring.

Whatever. The meds are a hard thing. I'm taking some myself and I'm watching how they're affecting me. It's not a small thing to say oh do meds. But unfortunately, we're at a point where we may have to live with side effects, especially for him. He's at the point (my ds, at 11 1/2, not saying for your ds yet) where the habits matter. We need this expectation that he can be calm and go into sessions and say what he needs, say what zone he's in, say he needs a break, kwim? And that was a lot of interoception work, self-advocacy, waiting work, etc. He can say I'm bored, choose a fidget, choose to work with someone who is "boring" etc. 

With my ds there's also kind of winning the quantity game, out numbering him. Now it's fatiguing to talk to people over and over, yes. But also if it's just me, it's not the same as many people making demands. I don't know. Teletherapy is turning out to be brilliant for that. Like even go LOW KEY, kwim? Like find someone who would play chess with him or something that would be pretty close to highly preferred, kwim? Just interaction, routine, getting used to it, going ok I can do it for this person maybe I can stretch to the next.

Edited April 22, 2020 by PeterPan

[PeterPan]

49 minutes ago, CuriousMomof3 said:

So, for example, you have states like Peter Pan's that give an enormous amount of services.

It's more nuanced than that. We have a tiered disability scholarship system for students *who give up their FAPE*. So a portion of the $ stays with the ps for administration of the IEP and the rest goes through a provider listed with the state to provide services. The providers can *amend* the IEP but the IEP is written by the school as it would be for that school district if the student were enrolled. 

So my ds' IEP says something like 15 minutes a week of speech, 15 minutes of OT, that kind of thing, but *I* direct the provision of services. If I want to service certain goals and ignore some others, spend all my allocation on social and ignore math, whatever, I have that discretion. (Obviously the therapists may push back, lol.) I can also take that money to a private school and use it to enroll him. So it seems like a lot of services, but it's that I take a tier of funding that is sufficient to pay for a private school and I do the academics myself and put it all into therapy. THAT is the flex of the scholarship system. It's also a weakness, because it means parents who can't do that but enroll in say an autism school are left paying the difference for therapies, tuition, etc. beyond what the scholarship provides. Some counties will help with this. 

In our state, if you go in as a homeschooler and are *not* planning on enrolling and are *not* trying to get the scholarship, they would eval but flat out refuse to write the IEP. They are not compelled to by law. Only the scholarship law compels them to write the IEP. So in our state it's not even a question. But you know, google your state, see what your law says. Your state law will determine whether the district is compelled to offer services, may optionally offer services, or is not to provide services. Most homeschoolers would find those services inconvenient, too much driving for too literally service. They work out better when the student is enrolled either in the ps or a partnering private school and getting them without transportation time and so much transition.

[WoolC]

1 hour ago, CuriousMomof3 said:

 

I agree with @PeterPan that a lot of this depends on what state you are in.  Under IDEA, public schools are required to offer Identification services (e.g. evaluations) to any student with a suspected disability in their area, and some services to students with identified disabilities in private school, but what services, and whether or not homeschooled students are included in those services is up to the district and state.  

So, for example, you have states like Peter Pan's that give an enormous amount of services.  On the other hand, the district where I live gives reading, and math small groups with a special educator, and speech with lots of rules about what they can look like and who can provide them.  The district where I taught, which is in a different state, only gives consultation and professional development and no direct services, and doesn't include homeschool students at all.  In most places, the document that provides services to kids who are not in public schools is called a service plan or an I.S.P.  

At 10, I would probably only do an I.E.P. if there was some kind of direct benefit to my child.  If, for example, they'd pay for speech therapy and I thought my child would benefit from speech therapy, or if I felt that my child needed an evaluation so I could understand his needs, then I'd go ahead with that process. I think that for some kids like you describe, there can be benefit from seeing someone skilled who isn't mom, just to expand comfort level, and that might be a reason to see if you could get services.

In my case, my 10 year old is currently eligible for special ed services,  and has a current I.E.P. because he used to be in public school and neither has expired yet.  In order for him to get services, we'd have to "convert" his I.E.P. to an I.S.P., something we've declined to do.  In our area, while kids in public school can get 1:1 support if they need it, reading and math for kids on I.S.P.'s are only given in small groups, and there just aren't groups of students in my district whose needs match my kid's.  In addition, we homeschool because of concerns about germs, and those services are offered in the public school, where I don't want to take him.  He could qualify for a small amount of 1:1 speech, but he gets speech that works for him for free from Medicaid, and they have providers with more experience with his specific needs.  So, we have declined.  

When your kid turns 14, or is within a year of turning 14, my answer changes, because that's when transition services start.  Transition specialists are very helpful at connecting you to services, and walking you through processes like applying for Social Security or Vocational Rehabilitation services.  In addition, at that point, having current evaluations becomes more important, because you'll need them for accessing supports, whether that's SAT accommodations, or vocational rehab services, or developmental disability services.   At that point, I'd go through the process, and then, if you feel the services wouldn't be helpful, decline them.  

I hope that helps!

 

Thank you!  This is exactly the kind of info I was looking for, especially what age this is going to be beneficial.  Just wanted to make sure I wasn’t waiting until it’s too late.  I’m in NC and I did all of the workshops with our local Autism Society when we first got diagnosed at 4 years old so I’m a little fuzzy on what was on offer, I’ll have to double check.  I do know they are not compelled to offer services after evaluating homeschoolers or private schoolers.  I’ve had multiple friends pull their kids with autism because they couldn’t get the local school to provide appropriate supports and accommodations without lawsuits.  I’m in a notoriously bad county for special needs.

[WoolC]

3 hours ago, PeterPan said:

Our state has a disability scholarship you access with an IEP so that's why people here are doing it. And although federal law requires them to *identify* disabilities, actually writing the IEP is a separate piece, more billing hours for them, meaning they're not going to do it unless legally compelled. So no, unless your state law requires them to write an IEP or you're enrolling, you'll get evals but no 504/IEP. 

Bingo. That's us. Meds are amazing. I got him maybe 80% of the way with genetics and supplements but that was just making him calm enough for me to work with him. Starting him with a new person was still 3 months of drama and anxiety, danger if the person doesn't know what they're doing, etc.

Have you thought about seeing a pdoc? Or running genetics plus a pdoc? To me, the genetics are what predicts why certain meds are necessary or others will backfire. The one we're using now is not perfect, but we're making it work for the time being. We had tried another one on occasions a few years ago that had high side effects (left him a zombie) and made him dangerous as it was methyl donor. So there's definitely risk, but it's mangageable. And for my ds, his anxiety is not like oh just think it away. It's visceral and shutting doors. Actually it was leaving him locked behind doors. You get the med up, and he comes out.

I'm not saying it's perfect, just that there's potential. The anxiety is definitely the elephant in the room. If I could figure out a way to get farther with supplements, I would, sigh. There's another gene (MAO A) I just started learning about and there's a med that I think targets it. The med we're using now hits HT1a, a different point in the food chain. The supplements are hitting 5HTP. Those sound similar for a reason. Different points in the process. 

I also think some therapists are just really unskillful, sure. So it's not like we can medicate our dc to the point where they can work with just ANYONE. His IQ, his whole bent, is way too whatever for that. I mean, some of these "professionals" are just, well they expect kids with a much higher IQ than theirs to overlook everything or not to notice or complain or have an opinion. And a masters doesn't mean someone is ready to keep up with him, sigh. The person still matters and sometimes it's hard to find that person. But getting the right person matters too, and unfortunately for our complex kids, that right person can be harder to find. 

We're doing really well with teletherapies right now. They give us access to better people and more choice. They eliminate transitions. They allow him to have flex for what tools he has. Now you lose environmental control, yes. But some of it is really good.

A lot of professionals will turn my ds down, because they know high IQ, ASD2, SLDs, all over the place for skills, that is not run of the mill. I had a BCBA say upfront his master's level intervention specialist wouldn't know what to do with him. Another IS didn't and wanted to play online games with him. This is not so easy or run of the mill or obvious to work with. He's going to outthink people and run circles around them and give them a hard time. They have to bring energy and can't be controlling. Some people are very controlling in their approach, and that consistently backfires with ds. But he's hard to work with, tiring. Sometimes he's a real JOY and they'll say that. But sometimes he's just tiring.

Whatever. The meds are a hard thing. I'm taking some myself and I'm watching how they're affecting me. It's not a small thing to say oh do meds. But unfortunately, we're at a point where we may have to live with side effects, especially for him. He's at the point (my ds, at 11 1/2, not saying for your ds yet) where the habits matter. We need this expectation that he can be calm and go into sessions and say what he needs, say what zone he's in, say he needs a break, kwim? And that was a lot of interoception work, self-advocacy, waiting work, etc. He can say I'm bored, choose a fidget, choose to work with someone who is "boring" etc. 

With my ds there's also kind of winning the quantity game, out numbering him. Now it's fatiguing to talk to people over and over, yes. But also if it's just me, it's not the same as many people making demands. I don't know. Teletherapy is turning out to be brilliant for that. Like even go LOW KEY, kwim? Like find someone who would play chess with him or something that would be pretty close to highly preferred, kwim? Just interaction, routine, getting used to it, going ok I can do it for this person maybe I can stretch to the next.

I’ve followed your posts over the years about your son, and I do think they’re very similar.  We’ve definitely thought about seeing a pdoc and running genetics.  I think it’s going to be necessary, though I’ve tried to put it off as long as possible.  In our area everything seems to be a 3 to 6 month waitlist and so I’ll call when behaviors are super challenging, and by the time we finally get in, things have calmed down.  He seems to cycle quite a bit.  I’m seriously terrified of long term consequences of the meds affecting brain development, but if we can’t get functional on the day to day now he won’t be learning the skills he needs to have as adult either.  It’s such a hard decision.
 

Going low key is how we’ve been operating with him for years, though we’ve found mainstream activities to work better for him than therapy activities so far.  I haven’t really found a therapist that works at his pace/low enough on demands.  He’s done Cub Scouts at our church for 2 years, literally never speaking a word to anyone, but completing the badge work, hiking, pitching tents, following the group, listening, smiling.  He was doing a lego league club and he actually did talk to other kids about the lego project because that was motivating enough for him, though he didn’t speak in a reciprocal, conversational way.  The activity has to be highly motivating to ds for him to participate at all, and it’s still not going to look like a neurotypical child doing the activity.  All of the progress we had made with those 2 activities have come to a halt with this pandemic and I’m afraid it will be hard for him to start them back up.

[PeterPan]

29 minutes ago, WoolC said:

 I’ve had multiple friends pull their kids with autism because they couldn’t get the local school to provide appropriate supports and accommodations without lawsuits.  I’m in a notoriously bad county for special needs.

Yes, what happens is kids who are ASD1/2 and have language have a harder time meeting the state definition of autism and having test scores that show significant effect on language. Now part of it is the schools aren't running the tests. But it's also easy to fall through the cracks. So in some districts in our state any medical diagnosis of autism and it's going to be that as your educational diagnosis. But in other districts they will try to use a lower tier disabling condition and not put autism as the disabling condition, even with a medical diagnosis. So they'll use SLDs or anxiety or anything else to skirt it. You have to meet every component and prove it with undeniable test scores and lawyers. It can be ugly. Or nice. But ugly. 

Our school is upfront saying they *do not* give IEPs to kids with ASD1. If your medical diagnosis is ASD2, they'll consider. 

[PeterPan]

3 minutes ago, WoolC said:

though he didn’t speak in a reciprocal, conversational way.

What do you think is causing that?

[WoolC]

Lego is one of his main interests so he would share information that he thought was important or useful to the project, sometimes repetitively, but he never engaged in small talk with the other kids, mostly due to anxiety,  but also I think there is a component there of just not wanting to be social in that way.  I’m not sure that he gets the point of engaging with people he knows casually.  It seems like he perceives it as a threat.  Just someone trying to exchange a greeting with ds makes him recoil, as in, he physically grits his teeth, looks down and balls his fist.

He talks within our family and some extended family,  but outside of that is really difficult.

Edited to add that I was attempting to reply to PeterPan but my iPad isn’t playing nice with the quote function today.

Edited April 22, 2020 by WoolC

[PeterPan]

17 minutes ago, CuriousMomof3 said:

But a kid like mine who would be far more expensive to educate in the public schools than the vast majority of kids with ASD wouldn't because multiple disabilities (which is what he'd be if we updated eligibility now) is one tier down,

So I'd have to check, but we have separate scholarships for autism and the other disabilities. The others are on tiers, and the student can go to tier 5 of that scholarship and have the same funding as the autism scholarship funding. However the autism scholarship removes issues like requiring stand mandated testing and it's a more flexible scholarship. So I could check, but I *think* multiple disabilities are tier 5 just like ASD, same funding. And the ASD scholarship funding basically equals tuition at an autism school but NOT full placement. Full placement obvious is higher, because that's additional therapies, etc. 

So it's making sure any kid significant enough to need the IEP saying autism also has the option to go an autism school.

22 minutes ago, CuriousMomof3 said:

I also need to give up FAPE in order to homeschool

Is that your state law??? You do not give up your FAPE to homeschool. That is a legal right and you can only give that up by signing and declaring you give it up. That was the first completely incorrect thing I was told by a school official in our district and that person lost their job soon after due to more failures with other homeschoolers. It's a common misunderstanding of the schools to think they have zero obligation and that we have given up our FAPE. We pay taxes, we retain our FAPE. I sign a legal document when I take the scholarship saying I'm giving up my FAPE in exchange for the scholarship. But simply homeschooling, notifying, not that does NOT somehow absolve the gov't. Any day you want to walk right up to the school, your FAPE is there waiting for you. But my FAPE is not. I got paid it basically through the scholarship instead. It's spent, gone, poof, my problem if I change my mind, no turning back for the fiscal year.

[PeterPan]

13 minutes ago, WoolC said:

Lego is one of his main interests so he would share information that he thought was important or useful to the project, sometimes repetitively, but he never engaged in small talk with the other kids, mostly due to anxiety,  but also I think there is a component there of just not wanting to be social in that way.  I’m not sure that he gets the point of engaging with people he knows casually.  It seems like he perceives it as a threat.  Just someone trying to exchange a greeting with ds makes him recoil, as in, he physically grits his teeth, looks down and balls his fist.

He talks within our family and some extended family,  but outside of that is really difficult.

Lego is awesome! My ds was so so avid until just a few months ago and then POOF. Sigh.

I don't know, it would be interesting to see what could change on that with anxiety meds or anxiety treatment. What about doing interoception work and seeing if *he* could get to where *he* can say what's going on and self-advocate? My ds finally got to the point recently where he is, in a fledgling way, using emotion language. He'll say he's bored. He's trying to answer my 1-5 scale for happy, anxiety, grumpy. That's really hard stuff. He made a comment (which was finally why I was sure to go ahead with meds) that he "wished something would help him sleep" ie stop his mind from going with anxiety. (there was context, anxiety discussion) 

Well anyways, back to your games thing. It's just surreal, because that's where we were and I liked it, hehe. Now he's like games, what games. So it changes.

[PeterPan]

30 minutes ago, CuriousMomof3 said:

I worry that they're buying off some of the strongest parent advocates, which probably harms the system as a whole.

What it does is to equalize out opportunity for students in poorer districts. I think those parents are very thankful for the choice. And we have a pretty strong pro bono advocacy system here. The state funds parent mentors in various counties to make sure a parent who has also gone through the IEP process is available to answer your basic questions, go to meetings with you, etc. While it can take lawyers, there's also a lot of help out there, people networking and making stuff happen. I used a pro bono lawyer the first time through and paid $350 for a consult the next time. Just her info from that initial consult was enough to help our team run better tests and gather better data. The issue was literally data. The school wouldn't run the tests that would show the issues and we had to know what to run. Once that was done, boom.

[PeterPan]

23 minutes ago, CuriousMomof3 said:

Nope, in your state OHI - major (I'm going to assume we'd get "major") is Tier 3, and Multiple Disabilities is Tier 4.  I looked it up. I'd link it, but I don't know if you want me to post your state.  The only things that are Tier 5 are ASD, TBI, and deaf/blind.  

My bad, I hadn't looked in a while. They've updated and autism is tier 6. Multi is tier 5. Funding is almost identical. That's fiscal year 2020.

 

Edited April 22, 2020 by PeterPan

[Storygirl]

@WoolC I agree with others who have said that the benefits of getting an IEP may depend upon your state. I found my state department of education website to be a gold mine of information and have spent hours doing research with the info there. You may have familiarized yourself with your state website already, but if not, I would recommend it. When I couldn't find an answer, I called or emailed my state department of ed, and they were good at either calling me back or answering via email.

The other resource that I would recommend is your county board of developmental disabilities. Within our state, even, the services vary from county to county, so I can't promise that yours will help you link to resources, but they SHOULD. There is a process for qualifying for services through the county.

There is also a process for qualifying for disability services through the state. DS16 started a state employment training service at age 15, so some states do start to help teens (I realize that is a few years away for your son, but it's good to know what could happen, looking forward).

One of our big concerns for our son with autism is that he speaks to family members and his friends but is extremely reluctant to speak to other adults (teachers, therapists, doctors, etc., and even me when I am functioning in an instructive role with him). This has a lot of implications for his employability, particularly with his ability to function in an interview setting.

DS has received speech therapy for communication through his IEP (he has been in school since fifth grade), starting in 6th grade. He has had three different school SLPs work with him: two at his previous private school (one quit after one school year, and another was hired for the next), and one who has worked with him for two years now through the public school.

He really really really disliked his speech therapy sessions with the first two SLPs. He would complain. He would invent excuses why he couldn't go to his scheduled speech period, and he would get away with this, because the SLP would not make him go, if he didn't want to. It was really bad and really concerning. The reason I bring this up is that he actually likes his current SLP and willingly works with her. Now, by willingly, I mean that he sits through is sessions, does the base mimimum of communication during the session, etc. He is not enthusiastic by any means. But he does participate.

So if you keep trying, you might find a therapist that can work with him. I know how hard it is, believe me. We're still working through those kinds of things here, as well. DS would greatly benefit from some additional therapy options, even now, but it's hard to get him to cooperate enough to make it worthwhile.

He has been seeing a counselor since the fall, and he does not complain about the counseling sessions, but he really does not speak during them, either, so I am always wondering about the benefit. But for him, just being willing to sit in the same room with an adult and partly cooperate is a step up.

[WoolC]

2 hours ago, Storygirl said:

@WoolC I agree with others who have said that the benefits of getting an IEP may depend upon your state. I found my state department of education website to be a gold mine of information and have spent hours doing research with the info there. You may have familiarized yourself with your state website already, but if not, I would recommend it. When I couldn't find an answer, I called or emailed my state department of ed, and they were good at either calling me back or answering via email.

The other resource that I would recommend is your county board of developmental disabilities. Within our state, even, the services vary from county to county, so I can't promise that yours will help you link to resources, but they SHOULD. There is a process for qualifying for services through the county.

There is also a process for qualifying for disability services through the state. DS16 started a state employment training service at age 15, so some states do start to help teens (I realize that is a few years away for your son, but it's good to know what could happen, looking forward).

One of our big concerns for our son with autism is that he speaks to family members and his friends but is extremely reluctant to speak to other adults (teachers, therapists, doctors, etc., and even me when I am functioning in an instructive role with him). This has a lot of implications for his employability, particularly with his ability to function in an interview setting.

DS has received speech therapy for communication through his IEP (he has been in school since fifth grade), starting in 6th grade. He has had three different school SLPs work with him: two at his previous private school (one quit after one school year, and another was hired for the next), and one who has worked with him for two years now through the public school.

He really really really disliked his speech therapy sessions with the first two SLPs. He would complain. He would invent excuses why he couldn't go to his scheduled speech period, and he would get away with this, because the SLP would not make him go, if he didn't want to. It was really bad and really concerning. The reason I bring this up is that he actually likes his current SLP and willingly works with her. Now, by willingly, I mean that he sits through is sessions, does the base mimimum of communication during the session, etc. He is not enthusiastic by any means. But he does participate.

So if you keep trying, you might find a therapist that can work with him. I know how hard it is, believe me. We're still working through those kinds of things here, as well. DS would greatly benefit from some additional therapy options, even now, but it's hard to get him to cooperate enough to make it worthwhile.

He has been seeing a counselor since the fall, and he does not complain about the counseling sessions, but he really does not speak during them, either, so I am always wondering about the benefit. But for him, just being willing to sit in the same room with an adult and partly cooperate is a step up.

Thank you for sharing all of this.  Especially the bolded, I’ve never met another mom whose autistic child presents this way.  Most have been flummoxed when I describe it.  It definitely makes therapy and all of the go to recommendations for ASD kids so difficult and we have major concerns about future employability.  I’ll definitely keep a look out for opportunities that will work for him and look into our state and county services again as well.

 

[PeterPan]

4 hours ago, WoolC said:

Thank you for sharing all of this.  Especially the bolded, I’ve never met another mom whose autistic child presents this way.  Most have been flummoxed when I describe it.  It definitely makes therapy and all of the go to recommendations for ASD kids so difficult and we have major concerns about future employability.  I’ll definitely keep a look out for opportunities that will work for him and look into our state and county services again as well.

 

Oh that's weird. I thought my ds was the unusual one being SO TALKATIVE despite his ASD2 label. But I've that's because of the over the top therapy amounts we did for the apraxia. Well that and I sometimes do like 2-3 hours a day of language work with him. 

But yeah, I think nothing coming out is the norm for autism. We used to do an outings club with a clinic, and it was a quiet bunch. And for ASD2, significant support for language is, from what I've been told, one of the things they're looking for, something that distinguishes it from ASD1. I also don't think you can draw conclusions about where someone's language is just because a lot is coming out. Some of these high IQ, very verbal kids, are doing a lot of scripting. 

I don't think anyone imagines anyone ASD2+ to be easily employable. They require significant support, and when you look at Michele Garcia Winner's social communication profiles at best you're talking someone who lives independently with assistance. It's why our kids qualify with the county board and will receive transition services. My ds doesn't have the emotional stamina, the problem solving, anything to work at a job with any stress or pace and definitely not 40 hours a week. I'm not sure how he could possibly work in our family business, not in any meaningful way. That will be a really hard thing to deal with. It's why we've talked about him having a business of his own or some kind of multi-pronged approach. (part time in a wage job, part time in a hobby job)  I don't want him lonely or bored, but he can't do one thing a lot either. 

It gets into other issues, like how he'll handle money. There are special accounts for this and each state handles it differently. I think in some ways I got a vision early or maybe just made peace with it. And when I've told his professionals where I could see this going, they agree yes that's about the mix of supports he's likely to need. And apparently the hurdle is getting there in your mind as a parent, how you help them be independent with support, for someone who would be unwise to live completely without support.

That's a rabbit trail.

4 hours ago, WoolC said:

Especially the bolded, I’ve never met another mom whose autistic child presents this way.

Do you have a hard time getting access to services in your area? Are there clinics within a sane distance specializing in autism? Have you thought about moving to get closer to services? Or maybe seeing if something farther away has once a month support groups or a FB group for parents where you could link up? 

[Terabith]

How do you find the county board of disabilities?  I find myself doubting that Cat would qualify, but she could really use assistance with employability stuff.  And if they'd work on driving with her, that would be amazing.  I had plans for this summer, to see about a volunteer job that we could do together.  But covid 19 makes that much less likely.  Actually it would be better if I wasn't there, if she were on her own.

[WoolC]

9 hours ago, PeterPan said:

Oh that's weird. I thought my ds was the unusual one being SO TALKATIVE despite his ASD2 label. But I've that's because of the over the top therapy amounts we did for the apraxia. Well that and I sometimes do like 2-3 hours a day of language work with him. 

But yeah, I think nothing coming out is the norm for autism. We used to do an outings club with a clinic, and it was a quiet bunch. And for ASD2, significant support for language is, from what I've been told, one of the things they're looking for, something that distinguishes it from ASD1. I also don't think you can draw conclusions about where someone's language is just because a lot is coming out. Some of these high IQ, very verbal kids, are doing a lot of scripting. 

I don't think anyone imagines anyone ASD2+ to be easily employable. They require significant support, and when you look at Michele Garcia Winner's social communication profiles at best you're talking someone who lives independently with assistance. It's why our kids qualify with the county board and will receive transition services. My ds doesn't have the emotional stamina, the problem solving, anything to work at a job with any stress or pace and definitely not 40 hours a week. I'm not sure how he could possibly work in our family business, not in any meaningful way. That will be a really hard thing to deal with. It's why we've talked about him having a business of his own or some kind of multi-pronged approach. (part time in a wage job, part time in a hobby job)  I don't want him lonely or bored, but he can't do one thing a lot either. 

It gets into other issues, like how he'll handle money. There are special accounts for this and each state handles it differently. I think in some ways I got a vision early or maybe just made peace with it. And when I've told his professionals where I could see this going, they agree yes that's about the mix of supports he's likely to need. And apparently the hurdle is getting there in your mind as a parent, how you help them be independent with support, for someone who would be unwise to live completely without support.

That's a rabbit trail.

Do you have a hard time getting access to services in your area? Are there clinics within a sane distance specializing in autism? Have you thought about moving to get closer to services? Or maybe seeing if something farther away has once a month support groups or a FB group for parents where you could link up? 

I think the part that trips people up is that my ds is incredibly talkative and unscripted within our family, super impressive vocabulary.  He’ll even talk to me or his brother in front of others in circumstances where he feels comfortable, but when someone else tries to engage him there is an immediate switch to guarded avoidance.  So some interpret that as just being shy, or rude, a discipline issue, etc.  

In theory, we should have wonderful access to services in our area.  We’re in a research, university area with several clinics.  In reality, the area is swamped, waitlists are long, and every time we’ve finally gotten in with a therapist what they have on offer isn’t an appropriate approach for ds, or they are flummoxed by his unique mix of issues and refer us on to someone else and the waiting process begins again. We’ve seen a developmental pediatrician, multiple neurologists, psychologists, a psychiatrist, the TEACHH clinic, RDI and MNRI therapists, OT, and play therapists...all offering conflicting opinions, costing thousands and offering very little actual help.  Without addressing the anxiety component, directly teaching social skills and emotional regulation just isn’t going to work, kwim?  We’ve kind of thrown our hands up and muddled along the best we can, but we’re going to need more in the teen/young adult years.  I think the next step is meds, which we’ve been avoiding for so long.  Moving isn’t an option because we’re within 5 minutes of my parents who are my support system.  Ds is comfortable with them so they’re my respite and another set of adults that ds has a relationship with.

Yes, to everything you said about employability issues.  We’re dealing with lots of rigid thinking, thoughts getting stuck in a loop, and really poor emotional regulation skills.  Ds is very interested in coding, so we’re trying to encourage that and get him into something he could do remotely.  It’s challenging though because he struggles with reading, writing and math (all of the traditional academic stuff) though he’s a total whiz with visual spatial, logic, engineering, stem type stuff.

[PeterPan]

1 hour ago, WoolC said:

He’ll even talk to me or his brother in front of others in circumstances where he feels comfortable, but when someone else tries to engage him there is an immediate switch to guarded avoidance.  

Have you read about selective mutism? Yeah, it sounds like there's significant anxiety, not a lack of resources. I'm not sure what the evidence based approaches are for mutism and anxiety driving that. My dd's language shuts down when she's *tired* and she has nothing to say when put on the spot. But when she's tired, poof, completely gone. She didn't realize it so much at home, but in college it was glaringly obvious. She'll text when that happens. 

[PeterPan]

1 hour ago, WoolC said:

Ds is very interested in coding,

Well that sounds great! A lot of coding right now is drag and drop. Can he read enough to follow what's going on on the screen? Reading fiction children's books is really different from reading the limited text needed to work commands on a computer or game system. I got my ds a nintendo to encourage some of that environmental reading. Not saying gaming is a good addiction, haha, just that when they're motivated and the tasks are getting them something, they apply what they've been taught and stretch themselves.

[WoolC]

13 minutes ago, PeterPan said:

Well that sounds great! A lot of coding right now is drag and drop. Can he read enough to follow what's going on on the screen? Reading fiction children's books is really different from reading the limited text needed to work commands on a computer or game system. I got my ds a nintendo to encourage some of that environmental reading. Not saying gaming is a good addiction, haha, just that when they're motivated and the tasks are getting them something, they apply what they've been taught and stretch themselves.

Yes, he’s playing around with scratch coding and lego boost, though he gets a little frustrated with some it’s limitations.  He wants to do python but doesn’t really have the stamina for it yet.  We started Minecraft a couple of months ago so coding and mods with that is the latest obsession.  
 

I have read a few books on selective mutism, though it’s not a term professionals have used for him.  The basic recommendation is to try to gently stretch the situations the person is comfortable speaking with through chaining, which is what we were attempting with church, scouts, lego league before all of the Covid stuff shut everything down.

[Storygirl]

7 hours ago, Terabith said:

How do you find the county board of disabilities?  I find myself doubting that Cat would qualify, but she could really use assistance with employability stuff.  And if they'd work on driving with her, that would be amazing.  I had plans for this summer, to see about a volunteer job that we could do together.  But covid 19 makes that much less likely.  Actually it would be better if I wasn't there, if she were on her own.

You can google Name-of-your-county and state and "board of developmental disabilities"

There should be a way for you to call and ask questions about what they need to determine eligibility.

Also google (or ask the county people) about state disability resources. It's our state vocational rehabilitation that offers the job training program for DS16. I don't know if other states have programs for teens, but it's worth asking about. This summer, DS has a job provided for him (paying minimum wage), where he and three other teens in the program will work at a business under the direction of a job coach. We are not sure yet if this will be affected by the coronavirus.

We can get driving help through the state and/or the county.

Our county pays for OT evaluations to determine driving readiness. DS had some of that testing done last fall but can't do the rest until he gets his temps and can be behind the wheel.

Our state will pay for a tutor to help him pass his temp exam, if he fails it the first time he tries (he has to try first, which he has not done yet).

Once he has his temps, if he is found to need adaptive driving lessons, he could use his county funding for that (it's evidently super expensive), but I think the state also can cover it.

We think driving is going to be a big hurdle for DS. I'm worried not only about whether he can learn to do it, but also whether he will ever be safe on the road, due to his inability to sustain attention. DH plans to have him practice with the riding lawn mower as much as possible this summer (so far, his attempts at driving the lawn mower, a golf cart, and the little cars at an amusement park have not reassured us at all).

Edited April 23, 2020 by Storygirl

[WoolC]

36 minutes ago, CuriousMomof3 said:

 

When you say he doesn't speak to people, do you mean he doesn't speak at all, or he doesn't initiate.  Would he use language for a purely pragmatic purpose with them?  Like, if he was asked if he wanted more snack, would he be able to verbally answer yes or no?

 

He wouldn’t verbally answer.  He may nod his head.  For instance at VBS or Sunday school he follows directions, does the crafts or games, but will not reply verbally when spoken to, and often will not respond with body language either.  I’ve offered picture cards and tech to help him communicate with others but he’s rejected it.  Language doesn’t seem to be the root problem, it’s more like he doesn’t have the desire to communicate.

[kbutton]

22 hours ago, CuriousMomof3 said:

 

I think this is a good example of how possibly well intentioned laws can be written in ways that lead to unintended consequences.

The tiers in your state's scholarship program fascinate me.  Any kid who has autism as a sole diagnosis gets the highest tier of services.  But a kid like mine who would be far more expensive to educate in the public schools than the vast majority of kids with ASD wouldn't because multiple disabilities (which is what he'd be if we updated elgibility now) is one tier down, and OHI (which is what's on his current IEP, because we haven't bother to have it updated to reflect changes in skills) is two tiers down.  I

So, this creates an incentive for districts to find kids eligible under other categories.  Now, I do think that some kids with ASD do fit under other categories under federal law, but not as often as the schools try and m ake it.

As a homeschooling parent, I am jealous of your state's scholarships.  I also need to give up FAPE in order to homeschool and we get nothing worthwhile at all, so the $17K or $23K worth of services we'd get in your state sounds amazing.  But as a public school teacher, I worry that they're buying off some of the strongest parent advocates, which probably harms the system as a whole.  Unfortunately, I think the latter was probably the intended consequence of the law, but I'm a bit of a cynic.  

We had to fight to get my son qualified properly. I am sure there are rural districts where private services are limited. Overall, I think this tends to work well though. In some cases, it might lead to less funding in schools, but I t continue to hear about kids in schools receiving better services than what I expected. I think the scholarship tends to help more kids get identified via homeschoolers coming out of the woodwork. I think it helps kids who don't present in a standard way, like my kid, access tailored services vs. us spending hours at home pushing him through work that is inappropriate because lower level classes would also not fit. And my son would just shutdown--BTDT. 

20 hours ago, CuriousMomof3 said:

 

Oooh, do you have a link?  I like to geek out about these kinds of things.  

In the state where I taught, they tier kids for funding based on number of hours.  Which is also imperfect, but makes more sense to me than tiering them based on eligibility category.  

There can be an enormous difference between level of need between two kids in the same category.  

Yeah, my son gets roughly twice as much funding as he can use. But it could also be argued that if we'd found some of the interventions we use now, earlier, we might've used more $$ early and be knocked down to a different category. My younger son with less pervasive issues is not ASD, and he could've, at one point, used more funding, lol! But it's all better than nothing.

[PeterPan]

1 hour ago, Storygirl said:

We think driving is going to be a big hurdle for DS. I'm worried not only about whether he can learn to do it, but also whether he will ever be safe on the road, due to his inability to sustain attention.

My mother tried to teach me at 16 and it was a disaster. I don't know if I *could* have done it, but I finally did at 21 in grad school and was much better off, lol. Got my license 2 weeks before getting married.   

Dd learned at 16 because dh was so insistent, but don't ask how many cars she has totaled. Her untreated anxiety made her a terror to ride with. Wobbling steering wheels, just nuts. Dh would take her out, but I couldn't ride with that, mercy. 

So I think roll with what your dh is willing to supervise. If he can drive safely, it's worth working on. If he can't, Uber, some kind of long term solution. 

[PeterPan]

17 minutes ago, WoolC said:

He wouldn’t verbally answer.  He may nod his head.  

My ds falls into the aut and doesn't answer. For him, because it's hard (praxis of speech) there's always that temptation to fall in and not answer. So with him, we're able to wait (refuse access, waiting for a response) and require speech. But that was something we started at 2 and it wasn't really an anxiety thing. It was more like this is hard so I just won't.  

Have you wondered if it would change with an anxiety med? Or if an anxiety med would put other (behavioral) strategies within reach? Like I would never would to stress out a highly anxious child for whom the task is not in reach. But my ds is sitting here playing Zelda and listening to Handel's Messiah on the med. He's so chilled, so I can push more, kwim? 

Edited April 23, 2020 by PeterPan

[kbutton]

@WoolC Sometimes public school Evans can open doors for your local disability services, but it's technically probably not necessary. You might need to jump through different hoops if you don't have an IEP to help get a toe in the door. My kids don't qualify for services, though they might qualify for some aspect of vocational rehab down the road...that department in our state covers a lot of barriers to employ

ment, including physical issues. In another state, I have a relative that has used it for medical devices that help her continue working. Another friend in this state gets her daughter's glasses covered--specialty lenses. they also overlap with what DD does. It's not super straightforward.

[PeterPan]

5 minutes ago, kbutton said:

Yeah, my son gets roughly twice as much funding as he can use.

Which is the BRILLIANCE of the system. Everyone is happy. State saves money, parents are pleased with a better service plan, kid has better outcome. Win win win. And if the kid winning means the ps is "losing" well that's a really lousy perspective on the part of the schools. Just saying. I know they had some of it at first with us, taking it personally that we didn't enroll ds, didn't want them to do the service. But I think they came to see the process with more respect, me with more respect. I'm making things happen they couldn't, so it's good. Pros and cons, choices, mutual respect.

[PeterPan]

8 minutes ago, kbutton said:

My younger son with less pervasive issues is not ASD, and he could've, at one point, used more funding, lol! But it's all better than nothing.

I'll bet you could make a case for that new tier 5 multiple disabilities as a qualification if you use Marfan plus plus plus. Maybe you don't need to now, but it might be there as a fight to have if it were needed, if the Marfan's was affecting his ability to access his education.

[kbutton]

56 minutes ago, PeterPan said:

I'll bet you could make a case for that new tier 5 multiple disabilities as a qualification if you use Marfan plus plus plus. Maybe you don't need to now, but it might be there as a fight to have if it were needed, if the Marfan's was affecting his ability to access his education.

It doesn't really bump the tiers. He's still just OHI minor, and the effect is sort of indirect--I mean, it's probably the reason for his speech issues (hypermobile jaw), motor issues, etc., but it's not debilitating. He would still get qualified for the same things, except the ADHD, which is not Marfan related.

[kbutton]

4 minutes ago, CuriousMomof3 said:

If a kid qualified due to their Marfan, it would probably put them in OHI, so it wouldn't change the coding.  Multiple Disabilities means that the child qualifies in more than one category and that education that is designed for just one category wouldn't serve the kid.

Interesting. He didn't have a Marfan diagnosis when he originally qualified. They used OHI because he had speech issues, ADHD, and learning "quirks." It sounds like you're saying it should be multiple disabilities. Interesting. Also moot because the kind of speech therapy he needs is hard to get here--the person we were using left private practice, and the practice itself made continuing excessively difficult. It's really hard to put Marfan as the basis other than differing arrangements for PE and PT/OT concerns. Speech issues are not associated with Marfan, and there are only loosely associated with connective tissue disorders in general (I think that will change--on the boards we've had threads about speech issues, CTDs, and breastfeeding issues, some of which are in hindsight). 

We have not tried to use the scholarship for PT--we just used insurance, but part of it is that we have to carefully select therapists that understand CTDs. OT, we used the scholarship briefly--the OT most familiar with CTDs from that practice was let go with no explanation (same provider as speech). That provider has been a revolving door.

[They speech/OT people really only want clients that are willing to never take vacations and who will do multiple sessions per week (and it's a drive). My son doesn't need multiple sessions per week, and we've been doing therapies for YEARS. We will be taking time off here and there, pretty much always with PLENTY of notice (they almost always can fill an empty session with notice because they were super busy). We have no family living in state, and sorry, but grandparent relationships trump therapy. We were really good clients, but we were made to feel like we were flaky, unreliable, and ungrateful. My older son got services there for a while (not articulation), but I had to find the curriculum for that. The therapist liked it--you'd think that would be something value-added from us that they could use. Nope. Very tired of the bossy top-down structure of us being cash cows vs. clients. ] 

[Terabith]

Anxiety meds were life changing here.  There was no ability to engage in anything until we had them on board.  I honestly can't recommend them enough.  I know it's a big decision, but they made a huge difference for both of my kids, but especially for my one who is on the spectrum.

[kbutton]

23 minutes ago, CuriousMomof3 said:

No, I'm saying the opposite.  That Marfan and ADHD are likely in the same category, so they wouldn't qualify him for multiple disabilities.  Although OHI is a weird category, because the kids who qualify for it have such a wide range of conditions.  

I guess, if you wanted to push it you might be able to argue that he qualifies for SLI and OHI for the ADHD, and that could add up to Multiple Disabilities.  

No pushing at this point. 🙂