Confused after school district's psyc eval (ASD-related)

macchiatto

I've posted before (though I'm a little sporadic) and have really appreciated auntie's insights. To recap the back story, one of my 5y/o twin boys has been in therapies since he was 2y9m, including EI, PT, OT,  and feeding therapy, plus PT, OT and itinerant SN teacher from the school district. Grand mal seizure at 22m and recent abnormal EEG, excessive fatigue/drowsiness, being followed by a devel pedi, neuro, and now a metabolic specialist. Has mild hypotonia, mild anxiety, mild SPD, and developmental coordination disorder, and we've had concerns for a while regarding social skills, perseverations, and rigidity. Overall he is high functioning and his issues are all in the mild range but there's an array of them. 

His devel pedi has evaluated him for ASD twice; at almost 4 and again this fall at almost 5. This fall, he scored a 5 on the ADOS but met criteria for ASD on the other evals. She concluded that he was "at risk for ASD" and said his presentation is along the lines of Asperger's. She recommended a weekly therapy group for kids with social skills delays, Navigating the Social World, continuing with OT. I posted here at the time and also got some books Auntie suggested for parents of kids with Asperger's. 

We're just finishing an eval through our new school district. His IEP meeting is on Tuesday. The school psychologist did her own very thorough evaluation, including an ADOS, a bunch of other assessments, observing him once at home and twice at preschool, and also an SLP (who participated in the ADOS) observed him at preschool once. 

The psyc and SLP met with us last week to share their eval results. They told us he actually met criteria for ASD on their administration of the ADOS and the rest of the ASD-related evals. They said they did use Module 3 because of his verbal abilities but that it might be a little misleading since it's not as "preschooler-friendly" as module 2. They did note the atypicalities they observed with him in person (shutting down when they tried to talk about feelings, acting very lethargic, giving lots of "I can't tell you" and "it's a secret"s when they tried to converse with him, especially during the ADOS, not doing much conversational back-and-forth--which is all pretty typical for him).

Then they observed him at preschool--3 times between the two of them. And they said that actually, he seemed to fit right in with all the other kids. They described a few interactions with classmates that are beyond what we observe when he is at play dates, birthday parties, church, etc. (He plays great with his twin brother but we see him do very little interacting with other kids. Brief snippets but nothing sustained; he usually has a hard time with reciprocal conversation unless you hit on one of his special interests.) They also said they were very impressed by his preschool and that his teachers are doing all the right things to help him--and all the kids--grow and thrive. It's a wonderful environment for him and the SLP said she wishes her 13 y/o son (HFA) had been able to attend a preschool like that. They said his preschool teachers also don't really have social concerns about DS. Which we knew ... however, when two different EI's observed him at preschool twice each back in Oct, they both noted moderate social concerns. They said he seems to blend in at a glance but that when you focus in on just him for a while, you could see he really was mostly doing parallel play and barely interacting with the other kids (which is what we still see outside of preschool). So it sounds like he has probably made a ton of progress just since Oct in that environment ... which is wonderful, but a little confusing, because those skills don't necessarily seem to be transferring outside of preschool.

Anyhow, this all leaves me with a few questions: 

* What would you make of the fact that his devel pedi concluded he is 'at risk for ASD' and that he met criteria for ASD on the school district's eval ... yet they said he is doing so well in the classroom that they're not recommending services for him? Apparently his anxiety, perseverations and rigidity haven't really been causing problems in preschool either (he is there 9-12 M-F), which is progress from last year. This really kind of leaves me wondering how concerned *I* should be about those issues ... how much time I should invest in something like doing Navigating the Social World with him or relax a bit and think maybe he's "outgrowing" it after all? Just wait and see how he does in K? DH and I still worry that he'll struggle more next year and beyond as expectations get higher ... and when he has to keep it together for 7 hrs/day instead of just 3. Sorry if this is rambling; I just feel like he's been right on the border with ASD and anxiety for a long time now and even after several evals, things are still muddy. I go back and forth between thinking I'm making too big a deal out of his issues, and thinking, "OK ... that's not normal. He needs help."

* What, if anything, would you ask for at the IEP meeting? Like I mentioned, I'm hoping he can get OT through the school district but I'm not sure. Again, I am worried he will struggle more in K where he has a lot less support (and he's doing OK fine motor wise in preschool now but they get a lot of 1:1 support, and he's also been getting private weekly OT all year. He scored at the 3rd percentile for fine motor skills on the private OT eval in August, which the school district agreed to accept). I did ask about things like social skills groups in the elementary schools and it sounds like he might be able to get into a group for social skills and/or anxiety apart from having an IEP, which might be a good solution if his issues are really mild enough now to not be "IEP-worthy."

Sorry this is so long but I appreciate any insights or suggestions you can give.

macchiatto

Auntie, thank you so very much for your thorough reply. My husband read it, too, and we both found it very helpful. I'll come back later and respond to some specific points, but first: We just got back from his IEP meeting. It was very frustrating. The conclusion was no IEP, no OT. They said that since they didn't feel the observational data currently supports an ASD Dx, and you can't get stand-alone OT, they didn't feel he needs special instruction at this time. EI and I tried hard to build a case for it but they kept coming back to how good he looked during their observations. His preschool teacher was also present and said how much progress he's made this year and how he's not a child that would have stood out to her as needing special services.

You had said OT should be a given; *should* it have been possible to get OT? If so, under what? Is this (not being able to get it as a stand-alone) something that varies by state? 

FWIW, I did end up checking the box that said I did not agree with the team's conclusions. I know I'll get an explanation letter in the mail. I'm sure they weren't happy about it but I can't in good conscience agree that DS doesn't need any special instruction.

macchiatto

-auntie- said:

macchiatto said:

I've posted before (though I'm a little sporadic) and have really appreciated auntie's insights. To recap the back story, one of my 5y/o twin boys has been in therapies since he was 2y9m. (Including EI, PT, OT, feeding therapy, PT, OT and itinerant SN teacher from the school district, etc.) Grand mal seizure at 22m and recent abnormal EEG, excessive fatigue/drowsiness, being followed by a devel pedi, neuro, and now a metabolic specialist. Has mild hypotonia, mild anxiety, mild SPD, and developmental coordination disorder, and we've had concerns for a while regarding social skills, perseverations, and rigidity. Overall he is high functioning and his issues are all in the mild range but there's an array of them. 

That's quite a laundry list of issues. It can see how they combine to impact and cloud what is at the core vis a vis ASD.

Fatigue/lack of stamina is sometimes related to hypotonia; it's more work to keep a muscles with low tone engaged even at rest. But this should be a bigger deal if the tone issue is more significant though some kids with weak cores can struggle with sitting up right. DS has mild hypotonia, but I suspect his complaints around fatigue are more related to how engaged he is in an activity. I'm sure the mito issue complicates your situation, but I've never heard him be too tired to chase around a railyard or museum- even in 105F heat that nearly slayed his father. And while he bitched loudly and often about marching in the town's Memorial Day as a boy scout in a class A but never once when marching the same parade with his trombone. 

That makes sense. He has always been low energy and we had chalked it up to the hypotonia, but we noticed a marked increase in his fatigue and daytime drowsiness about a year ago, went to the pedi for it after several weeks, then followed up with devel pedi at his summer checkup. B/c of the fatigue, unexplained bouts of vomiting and other aspects of the "laundry list" she referred us to a metabolic specialist to evaluate for mito or other conditions. (That was inconclusive, but we're starting him on CoQ10 to see if that helps.)

His devel pedi has evaluated him for ASD twice; at almost 4 and again this fall at almost 5. This fall, he scored a 5 on the ADOS but met criteria for ASD on the other evals. She concluded that he was "at risk for ASD" and said his presentation is along the lines of Asperger's. She recommended a weekly therapy group for kids with social skills delays, Navigating the Social World, continuing with OT. I posted here at the time and also got some books Auntie suggested for parents of kids with Asperger's. 

What did you think of the books? Did anything feel familiar?

I hate to say it, but I haven't gotten very far through them yet. DH and I were both dealing with some serious health issues this winter so I'm behind. From what I've read so far (the OASIS Guide) it did seem familiar.

Do you know what other scales were used? GADS? GARS?ADI-R? CARS? 

The devel pedi used the:

ADI-R (met criteria)

SCQ: Scored 14 (So I guess he was one point below the cutoff after all? I was thinking she'd said he met criteria on everything except the ADOS but the written report says this was a 14.)

ADOS2, module 3: Scored a 5.

2 different Early Interventionists observed him at preschool and their observations were consistent with ASD, although his teachers' ratings were not. 

I like Michelle Garcia Winner's curricula better than Navigating the Social World. I feel like MGW really nails how the social piece works. I also like that her materials are fine tuned to specific age levels and the sorts of social behaviors they need at each age/stage. NTSW seems geared for older kids than where yours is now.

Good to know; thanks! Is MGW's curriculum something I could do with him at home?

We're just finishing an eval through our new school district. His IEP meeting is on Tuesday. The school psychologist did her own very thorough evaluation, including an ADOS, a bunch of other assessments, observing him once at home and twice at preschool, and also an SLP (who participated in the ADOS) observed him at preschool once. 

The psyc and SLP met with us last week to share their eval results. They told us he actually met criteria for ASD on their administration of the ADOS and the rest of the ASD-related evals. They said they did use Module 3 because of his verbal abilities but that it might be a little misleading since it's not as "preschooler-friendly" as module 2.

Module 3 seems like an appropriate choice. JMHO, he's 5- that's school aged. Plus he's had the enrichment of a quality preschool program and a built-in social model.

 They did note the atypicalities they observed with him in person (shutting down when they tried to talk about feelings, acting very lethargic, giving lots of "I can't tell you" and "it's a secret"s when they tried to converse with him, especially during the ADOS, not doing much conversational back-and-forth--which is all pretty typical for him).

Sounds a lot like DS at that age as well. I found that during triennials and other periods where we were closely examining his skill sets, he would get very self conscious about being drilled and endeavor to shut the process down.

Interesting! My son doesn't do this always, but somewhat often. 

Then they observed him at preschool--3 times between the two of them. And they said that actually, he seemed to fit right in with all the other kids. They described a few interactions with classmates that are beyond what we observe when he is at play dates, birthday parties, church, etc. (He plays great with his twin brother but we see him do very little interacting with other kids. Brief snippets but nothing sustained; he usually has a hard time with reciprocal conversation unless you hit on one of his special interests.)

It's possible her can interact more easily and appropriately in a more structured preschool setting than in a novel situation like a birthday party or with kids he only sees weekly at church. 

Playing great with his brother may not necessarily be a good measure of his skills IRL.

We agree.

 Because there are a significant number of kids on spectrum who are twins and trips, there's a lot of information about the unique dynamics associated with unmatched sets. Two things tend to happen when a child who has a mild form of ASD plays with his NT twin- either the NY sib- who is socially driven is willing to accommodate and submit to a dysfunctional play situation where they affected twin calls the shots- or- the NT twin scaffolds the play in such a manner as to keep his less skilled twin engaged. 

Very interesting! I'll have to look more into that research. DH and I agreed we can see the scaffolding thing happening. We also tried to remind the evaluators of this factor when they were observing his social skills at home and on the playground.

 They also said they were very impressed by his preschool and that his teachers are doing all the right things to help him--and all the kids--grow and thrive. It's a wonderful environment for him and the SLP said she wishes her 13 y/o son (HFA) had been able to attend a preschool like that. They said his preschool teachers also don't really have social concerns about DS. Which we knew ... however, when two different EI's observed him at preschool twice each back in Oct, they both noted moderate social concerns. They said he seems to blend in at a glance but that when you focus in on just him for a while, you could see he really was mostly doing parallel play and barely interacting with the other kids (which is what we still see outside of preschool). So it sounds like he has probably made a ton of progress just since Oct in that environment ... which is wonderful, but a little confusing, because those skills don't necessarily seem to be transferring outside of preschool.

This may be one of those situations where time will flush out more information. DS positively thrived in a traditional play-based nursery school and did quite well even as he stepped up to the more "academic" pre-K program. He teachers reported that he seemed a little less mature than peers and that he preferred play to seat work, but had no real concerns about him. He had friends on the playground and did fine at playdates.

That said, it's pretty usual for social skills to not automatically globalize to new situations. So while he may play functionally with a child at preschool, he might not be able to replicate that behavior if they ran into one another at a playground or if you planned a playdate in your home. A skill is considered emerging until he can access it in several settings.

That all makes a lot of sense. And I'm glad you explained it that way, because at the meeting when we asked the psyc and SLP why the social skills we hear about at preschool don't seem to be showing up in other settings, they started talking about how if it was ASD, it would be consistent across environments and that maybe some of the social issues elsewhere (especially the shutting down/"I can't tell you/it's a secret" that they observed for themselves in the ADOS) were behavioral.

Anyhow, this all leaves me with a few questions: 

* What would you make of the fact that his devel pedi concluded he is 'at risk for ASD' and that he met criteria for ASD on the school district's eval ... yet they said he is doing so well in the classroom that they're not recommending services for him? Apparently his anxiety, perseverations and rigidity haven't really been causing problems in preschool either (he is there 9-12 M-F), which is progress from last year. This really kind of leaves me wondering how concerned *I* should be about those issues

You should trust your gut. It's telling you to play attention to what is going on.

I think kindie, in a mainstream classroom- without his brother- will reveal a lot more information. With more maturity, he may blossom. Or he may be one of those kids who is always a little quirky but not quite atypical enough to trigger an ASD dx. Or he may really struggle with a full day and the ramped up expectations of "real school".

Again, that makes a lot of sense.

I've talked to a handful of people about our concerns and where we're at, and a couple of them tried to tell me I was "borrowing trouble" by considering that he may be growing toward an ASD Dx. (FTR, he scored a 1 on the ADOS at 3y10m, and more recently has scored a 5 and then met criteria. So ... yeah.) 

 ... how much time I should invest in something like doing Navigating the Social World with him or relax a bit and think maybe he's "outgrowing" it after all? 

Outgrowing what?

If he is on spectrum, consider that ASD is a developmental delay in social and emotional maturity that is generally about 1/3- 1/2 that child's chronological age.  Even as he gets more competent around social behavior, his peers are gaining new skills at an even faster rate. If he has AS or ASD, he will be further behind his peers next year than he was last just because the gap grows well into high school before it starts to close again.

If he is on the spectrum, to what extent might interventions, social skills training, etc., help narrow that gap?

If he isn't on spectrum, but just has a laundry list of behaviors that look like it, the gap may not widen over time. This is one of the reasons I really like a full scale Vineland- it really teases out the glitches that come with ASD and an average + IQ like nothing else out there.

I just looked at the school psych's report. He scored at the 9th percentile on the Vineland; are there specific subscores I should look at? His cognitive scores on the DAS-2 were WNL.

Just wait and see how he does in K? 

That's probably all you can do. FWIW, a lot of kids who fly under the radar in preschool get their Aspergers dx in kindie or first. There are more subtle presentations that aren't as obvious until 4th/5th and late middle school. DS got his dx at the end of kindie when he was almost 7.

This, as DH said, makes us feel better about the "wait and see" approach. Like we've done all we can do up to this point.

DH and I still worry that he'll struggle more next year and beyond as expectations get higher ... and when he has to keep it together for 7 hrs/day instead of just 3.

He may, It's pretty common for a kid to have the bandwidth to pass as NT for a few hours a day and then just lose it at home. 

That's very good to know. When we asked about this in the meeting--how he's doing at preschool versus elsewhere--they didn't acknowledge this possibility at all.

If it happens, it will be data collected to fine tune his educational supports. If he's the sort of kid who is bored aside from engaging in what he likes and who isn't very robust in terms of stamina you can safely bet on this. DS was flaky in kindie; but we chose a full day program that had 2 hours of free play each afternoon. The shit hit the fan in first when free play was replaced by more academic seat work.

His private OTs have all commented on him having difficulty staying engaged with nonpreferred tasks, following through with activities, but his preschool teachers don't report any of that. It'll definitely be interesting to see what happens in elementary school along those lines.

 Sorry if this is rambling; I just feel like he's been right on the border with ASD and anxiety for a long time now and even after several evals, things are still muddy. I go back and forth between thinking I'm making too big a deal out of his issues, and thinking, "OK ... that's not normal. He needs help."

It's hard to trust you gut when things are so murky. Time should help you see things with more clarity. Much as we'd all like to create the ideal placement for kindie and not revisit it until you choose a college, it doesn't usually play out like that. 

This was hard for us, too. DS was pretty "out-of-seat" in school, but he never acted out as so many with his dx do. He was pretty cooperative excepting his ADHD and dyslexia stuff. And he was the rare bird who was worse in school than at home. His early teachers would tell me about stuff I had never actually witnessed. It was hard.

I bet.  
And yeah, his teachers said they don't see him ever having behavior problems at school. He's a pretty compliant kid when he can be; at home the issues we have are usually related to his anxiety or rigidity ... or just taking foreeeever to do things and then falling apart if you try to hurry him.

* What, if anything, would you ask for at the IEP meeting?

It's really hard to say. Your DS has never been a full day kindie student before, so you can only guess at what he will need. Plus he has 6 months of growth before he's even in the classroom.

Sometimes you have to expose your child to the situation and let them fail before you can effectively advocate for what they need. It sucks, but LRE demands that a child demonstrate a need for a service rather than proactively pulling them out of mainstream to offer it. Sometimes you expect something to go disastrously and your child finds the skills on their own and surprises the crap out of you.

We wanted to make sure we weren't missing anything that would help, but that makes sense. Of course, it's a moot point now since he didn't get an IEP after all.

The important take-away is that his IEP is a living document; it's sort of like the Constitution. Once you have more information about his fit as a kindie student, you can reopen and add to it. If he's struggling in areas you hadn't expected, you can call for more evaluations. 

 Like I mentioned, I'm hoping he can get OT through the school district but I'm not sure. Again, I am worried he will struggle more in K where he has a lot less support (and he's doing OK fine motor wise in preschool now but they get a lot of 1:1 support, and he's also been getting private weekly OT all year. He scored at the 3rd percentile for fine motor skills on the private OT eval in August, which the school district agreed to accept).

OT sounds like a given since writing, scissors and painting are all something he needs to do to access the curriculum. 3%tile should be enough to trigger some support.

 I did ask about things like social skills groups in the elementary schools and it sounds like he might be able to get into a group for social skills and/or anxiety apart from having an IEP, which might be a good solution if his issues are really mild enough now to not be "IEP-worthy."

Social skills are critical as an educational skill. Not just in the classroom working on group projects with peers, but also in gym, on the playground and at the lunch table. Don't let them dismiss this as not counting because it isn't "academic".  Watch for this. 

In a lot of schools, social skills are pushed into the mainstream classrooms as part of the day. DS's public elementary had a conversation circle as part of every classroom's opening to the day. But they also did social skills groups for kids who needed more. DS did a small 3 kid MGW group in 2nd-4th when his buudies went off to middle school. After that the SLP paired him with a couple ADHD kids who had similar impulsivity issues dogging them.

I'll ask them if they use this curriculum. If not, perhaps they'll be open to suggestions? 

Sorry this is so long but I appreciate any insights or suggestions you can give.

The 2 biggest and most important things to remember are-

1. You can reopen his IEP at any time and fix it on-the-fly if some part isn't working. Waive the 10 Day Notification and advocate for something different. I once changed a classroom placement with DS's IEP custodian after BTSN because his science class wasn't a good fit.

2. Always have a plan B. Know what else is available in your district and private options if should you need to change things up.

Plan B is definitely needed now, with no IEP. We are getting private OT, and we may follow up on the devel pedi's suggestion of the social skills/speech group. One question: Do you think pursuing a 504 plan might help? Or truly just wait til he gets to K and see? Would a medical Dx of Developmental Coordination Disorder help him get OT through a 504 plan? Or would an SPD Dx help him possibly get accommodations?

macchiatto

-auntie- said:

macchiatto said:

Auntie, thank you so very much for your thorough reply. My husband read it, too, and we both found it very helpful.

I'm glad it was some help.

 I'll come back later and respond to some specific points, but first: We just got back from his IEP meeting. It was very frustrating. The conclusion was no IEP, no OT. They said that since they didn't feel the observational data currently supports an ASD Dx, and you can't get stand-alone OT, they didn't feel he needs special instruction at this time.

I'm sorry. That must've been frustrating.

 EI and I tried hard to build a case for it but they kept coming back to how good he looked during their observations. His preschool teacher was also present and said how much progress he's made this year and how he's not a child that would have stood out to her as needing special services.

EI? Do you live in one of those states that allows school aged children to remain on IFSPs? In most places EI is over on the 3rd birthday and the school district kicks in. 

Yes. We're in SC. He ended up being able to keep his EI till he turned 5, and then reapplied and were approved to keep her till he turns 6 (since as he was approaching his 5th birthday he was in the middle of evals for ASD and mito). He gets family training 1x/wk with his EI and she also provides a level of service coordination. She's been amazing.

Unfortunately, sometimes bright kids with subtle presentations don't qualify with "educational needs" around the preschool/kindie transition. The bar is pretty low for all kids at this age and one like yours who has engaged parents, a sibling and experience at a quality preschool may not meet the criteria. The majority of kids in this country don't get preschool, so you can see where they aren't expecting a whole lot from this age group.

This lack of IEP will set him up to enter kindie without one. IME, that goes one of two ways. He will either surprise you by doing better than you hoped or his needs will become more apparent to the school in kindie or first and you'll revisit the whole evaluation thing again. 

Got it. It's frustrating to know that we might have to start all over in the fall when this eval process took about 5 months but hopefully it would go at least somewhat faster next year.

And WTH? preschool teacher. She needs a ballgag. Seriously, maybe your DS is thriving because of the supports in place and that pulling them abruptly will end all that progress. It's a funny thing, when I wear my glasses I can see really well and drive safely, but if you take them away because I've been doing so well with them, the notion of crash and burn won't be a figurative one. 

Oh, I was livid. And I LOVE your metaphor. That is how I see it but it seemed like when I tried to make that point, I got impassive faces; like they were giving exactly zero weight to what supports he currently has in place that are enabling him to function at his current level. I got tangents about how medical OT and educational OT are two different things ... but his private OT is working with him mostly on school-related stuff. The preschool director agreed with me and explained to the team how much support the kids get in their school, how for 40 mins every morning there is 8 kids with 2 teachers so they're able to do most of their art projects 1:1. 

I also tried to make the point that DS has been working with OT, former SN itinerant teacher, EI, etc., for two years on cutting with scissors and how to hold a pencil ... and yet on his progress report in Feb, these were still listed as "developing skills" instead of proficient. His preschool teacher then piped up that that doesn't mean he's doing badly; that she'd say about 1/3 of the students in the class are still "developing" in some of those fine motor skills (again ... livid). She has been a fantastic teacher and I know she was only trying to help, but really? Have those children been in preschool and therapies for 2 years? My point was that if he's still "developing" in those basic fine motor skills even with all that therapy and current support, he needs OT. Is that not a valid point?

You had said OT should be a given; *should* it have been possible to get OT? If so, under what? Is this (not being able to get it as a stand-alone) something that varies by state? 

He doesn't need an ASD to qualify for OT in a public school. Did their observation include him using age appropriate fine motor skills? Where did the 3rd %tile come from? Diagnosis shouldn't drive services, need should. FWIW, in my district I know more little kids getting OT who don't have an ASD than who do. Once they get to handwriting as a daily thing, this could look different. 

Good to know. The 3rd percentile came from a private OT eval that was done at the end of August (when DS was finally re-starting private OT). The school OT emailed me in November-ish saying that since the OT used the same assessment she does (the Peabody), would I be OK with her accepting the private OT eval rather than doing her own. I agreed.

However. In the IEP meeting, the OT seemed apologetic that it had been this long since that eval was done, especially when hearing Preschool Teacher and the psyc/SLP describe how well DS is doing. Somebody brought out the Beery VMI that the school psyc had done and even though DS scored at the 16th percentile, he had copied a few shapes that they found impressive. So between that and Preschool Teacher talking about how his fine motor skills compare to his classmates', "the team" seemed to conclude that he doesn't have a significant fine motor delay and started questioning whether maybe he was having an off day when the private OT eval was done (no, he was not. But yes, he has made a lot of progress since then. As one would hope, considering he has been in a 5-day quality preschool and private OT since then). So they basically dismissed the Peabody/private OT eval after all, and kept saying how OT isn't a stand-alone so he couldn't get it anyway if they can't support ASD/social-communication delay that's affecting his education.

FWIW, I did end up checking the box that said I did not agree with the team's conclusions. I know I'll get an explanation letter in the mail. I'm sure they weren't happy about it but I can't in good conscience agree that DS doesn't need any special instruction.

That seems the best approach. You have two options here. You can ask for an IEE and push to get an IEP in place before kindie. Not sure if you have the time to work through that or how obstinate your district will be in terms of due process and such. This is interpretted as a salvo over their bow by some. Or you can stand back and see how the first marking period goes, collecting data all the while as a member of the CSE. I'd probably try it their way first and be all up in their business if it doesn't pan out. 

Again, that makes a lot of sense. I'm definitely leaning toward the second option.

I would also make sure that your kids are in different classes so that your NT son isn't able to scaffold for his twin nor called into service by his teachers as a kind of para. 

This has been a point of controversy. This year, they are apart for 40 mins/morning (at my request, during a time when the class splits into 2 groups) but together the rest of the 3 hrs. Their teachers (who are pro-separating twins in general) said that they have had zero issues with them being in the same class. They have different friends (W--our NT DS--gravitates toward the high-energy kids, and X--SN DS--toward the quiet kids), aren't competing, don't spend much time together, they don't see W doing much for X. There doesn't seem to be dependence. I am sure it is there at a more subtle level (i.e. X is probably calmer and more secure simply b/c W is in the room) but the teachers say they interact basically like any other 2 kids in class, and subs/visiting moms are always surprised to find out they're twins.

I do see your point for sure, especially as they get into elementary. However, DH feels *very* strongly about keeping them together for at least one more year. He feels like the transition to K is going to be overwhelming enough for X as it is, that separating him from his twin at the same time would push him over the edge and be detrimental. He feels like at this young age, especially since they seem to be doing so well in the same classroom and W doesn't seem to be taking on any inappropriate responsibility or doing too much scaffolding in the classroom, that having that security of someone familiar in the class might help X have a little extra security and confidence to develop those emerging social skills, and that he will then be more ready to separate in 1st. I see your point for sure, but I see his too. I'm conflicted, but leaning toward keeping them together just for K (ideally with them separated for part of the day, if possible, like they are now) and separate classes for 1st and beyond.

macchiatto

-auntie- said:

macchiatto said:

-auntie- said:

macchiatto said:

Auntie, thank you so very much for your thorough reply. My husband read it, too, and we both found it very helpful.

I'm glad it was some help.

 I'll come back later and respond to some specific points, but first: We just got back from his IEP meeting. It was very frustrating. The conclusion was no IEP, no OT. They said that since they didn't feel the observational data currently supports an ASD Dx, and you can't get stand-alone OT, they didn't feel he needs special instruction at this time.

I'm sorry. That must've been frustrating.

 EI and I tried hard to build a case for it but they kept coming back to how good he looked during their observations. His preschool teacher was also present and said how much progress he's made this year and how he's not a child that would have stood out to her as needing special services.

EI? Do you live in one of those states that allows school aged children to remain on IFSPs? In most places EI is over on the 3rd birthday and the school district kicks in. 

Yes. We're in SC. He ended up being able to keep his EI till he turned 5, and then reapplied and were approved to keep her till he turns 6 (since as he was approaching his 5th birthday he was in the middle of evals for ASD and mito). He gets family training 1x/wk with his EI and she also provides a level of service coordination. She's been amazing.

That's great that you are able to do a kind of hybrid thing with supports for you as a family and the school district services aimed at school aged kids. 

Yes, it has been wonderful! From what I hear, I don't think a lot of families/EI's really look into this option but we're thankful our son's EI has been really proactive and willing to get DDSN approval for him to continue with her.

By the way, I had written two posts in a row above; the first was a more detailed response to your first reply, answering some of your questions and asking a few of my own, and then the one you just replied to. If you have a few extra minutes and wouldn't mind scrolling up to see my other post, I would really appreciate it! 

Unfortunately, sometimes bright kids with subtle presentations don't qualify with "educational needs" around the preschool/kindie transition. The bar is pretty low for all kids at this age and one like yours who has engaged parents, a sibling and experience at a quality preschool may not meet the criteria. The majority of kids in this country don't get preschool, so you can see where they aren't expecting a whole lot from this age group.

This lack of IEP will set him up to enter kindie without one. IME, that goes one of two ways. He will either surprise you by doing better than you hoped or his needs will become more apparent to the school in kindie or first and you'll revisit the whole evaluation thing again. 

Got it. It's frustrating to know that we might have to start all over in the fall when this eval process took about 5 months but hopefully it would go at least somewhat faster next year.

If you need to revisit this, a lot of the evals are done. It would be more a matter of what they see in observations in the new classroom setting.

And WTH? preschool teacher. She needs a ballgag. Seriously, maybe your DS is thriving because of the supports in place and that pulling them abruptly will end all that progress. It's a funny thing, when I wear my glasses I can see really well and drive safely, but if you take them away because I've been doing so well with them, the notion of crash and burn won't be a figurative one. 

Oh, I was livid. And I LOVE your metaphor. That is how I see it but it seemed like when I tried to make that point, I got impassive faces; like they were giving exactly zero weight to what supports he currently has in place that are enabling him to function at his current level.

That's one of the main differences between EI and the school district. EI is proactive around potential for issues and IEPs are strictly driven by demonstrated educational need. Some times you have to let a child fail to get anyone's attention.

 I got tangents about how medical OT and educational OT are two different things ... but his private OT is working with him mostly on school-related stuff. The preschool director agreed with me and explained to the team how much support the kids get in their school, how for 40 mins every morning there is 8 kids with 2 teachers so they're able to do most of their art projects 1:1. 

A lot can change between now and the start of school. He might do better than you expect. If the educational expectation for the age isn't mastery, they won't get excited about needing some help. 

I also tried to make the point that DS has been working with OT, former SN itinerant teacher, EI, etc., for two years on cutting with scissors and how to hold a pencil ... and yet on his progress report in Feb, these were still listed as "developing skills" instead of proficient. His preschool teacher then piped up that that doesn't mean he's doing badly; that she'd say about 1/3 of the students in the class are still "developing" in some of those fine motor skills (again ... livid). 

That's probably true. But. The only thing that matters at you child's CSE meeting is what your child needs. It kind of doesn't matter what kids in class can or can't do. Some of those kids might not have interest in scissor activities or haven't had practice and will be proficient in no time or are disabled themselves and need OT.

That makes sense to me! I wondered about that; how much they should factor in how he's doing compared to his classmates. It does seem more subjective since a child may happen to be in a class with more advanced or less advanced classmates.

She has been a fantastic teacher and I know she was only trying to help, but really? Have those children been in preschool and therapies for 2 years? My point was that if he's still "developing" in those basic fine motor skills even with all that therapy and current support, he needs OT. Is that not a valid point?

Totally valid. Hopefully his new teachers will be more proactive in getting him help.

You had said OT should be a given; *should* it have been possible to get OT? If so, under what? Is this (not being able to get it as a stand-alone) something that varies by state? 

He doesn't need an ASD to qualify for OT in a public school. Did their observation include him using age appropriate fine motor skills? Where did the 3rd %tile come from? Diagnosis shouldn't drive services, need should. FWIW, in my district I know more little kids getting OT who don't have an ASD than who do. Once they get to handwriting as a daily thing, this could look different. 

Good to know. The 3rd percentile came from a private OT eval that was done at the end of August (when DS was finally re-starting private OT). The school OT emailed me in November-ish saying that since the OT used the same assessment she does (the Peabody), would I be OK with her accepting the private OT eval rather than doing her own. I agreed.

However. In the IEP meeting, the OT seemed apologetic that it had been this long since that eval was done, especially when hearing Preschool Teacher and the psyc/SLP describe how well DS is doing. Somebody brought out the Beery VMI that the school psyc had done and even though DS scored at the 16th percentile, he had copied a few shapes that they found impressive. So between that and Preschool Teacher talking about how his fine motor skills compare to his classmates', "the team" seemed to conclude that he doesn't have a significant fine motor delay and started questioning whether maybe he was having an off day when the private OT eval was done (no, he was not. But yes, he has made a lot of progress since then. As one would hope, considering he has been in a 5-day quality preschool and private OT since then). So they basically dismissed the Peabody/private OT eval after all, and kept saying how OT isn't a stand-alone so he couldn't get it if they can't support ASD/social-communication delay after all. 

OT can absolutely be a stand alone. That said, an eval from August in a child this age who has been in preschool and therapy is so old as to be invalid at this point. 

Wow. We were told repeatedly and insistently in the IEP meeting that "it's a federal law" that a child cannot get stand alone OT. Do you know why they may have said that?? Is there a law that tends to get misinterpreted, or interpreted differently in different states? If you can get stand alone OT, how does a child usually qualify for that?

Also, I can see how the eval would be too old by this point. However, it bothered me that they had agreed to accept it, and it wasn't till we were in the IEP meeting that they basically disregarded it. Should they have done their own eval if they were going to dismiss the private one? That just really caught me off guard.

FWIW, I did end up checking the box that said I did not agree with the team's conclusions. I know I'll get an explanation letter in the mail. I'm sure they weren't happy about it but I can't in good conscience agree that DS doesn't need any special instruction.

That seems the best approach. You have two options here. You can ask for an IEE and push to get an IEP in place before kindie. Not sure if you have the time to work through that or how obstinate your district will be in terms of due process and such. This is interpretted as a salvo over their bow by some. Or you can stand back and see how the first marking period goes, collecting data all the while as a member of the CSE. I'd probably try it their way first and be all up in their business if it doesn't pan out. 

Again, that makes a lot of sense. I'm definitely leaning toward the second option.

Can you get a second opinion from the best and most respected person in you metropolitan area in time to be able to use it? You might do as well to wait until he's in school and you get a real feel for how he's doing.

That's a good question. I would need to find out who that person would be; they tend to have pretty long waiting lists. It does seem at this point like waiting till he's in K and having data about how he's doing in that classroom environment might put us in a better position, especially since I'm not sure how DS would score for fine motor if they do retest him now and he he may not qualify for now. 

His EI did say she was very disappointed with how the meeting went and she's looking into a local organization called Pro Parents (designed to help parents of kids with SN to access services) that may be a resource for us.

I would also make sure that your kids are in different classes so that your NT son isn't able to scaffold for his twin nor called into service by his teachers as a kind of para. 

This has been a point of controversy. This year, they were apart for 40 mins/morning (at my request, during a time when the class splits into 2 groups) but together the rest of the 3 hrs. Their teachers (who are pro-separating twins in general) said that they have had zero issues with them being in the same class. They have different friends (W--our NT DS--gravitates toward the high-energy kids, and X--SN DS--toward the quiet kids), aren't competing, don't spend much time together, they don't see W doing much for X. There doesn't seem to be dependence. I am sure it is there at a more subtle level (i.e. X is probably calmer and more secure simply b/c W is in the room) but the teachers say they interact basically like any other 2 kids in class, and subs/visiting moms are always surprised to find out they're twins.

Even if your NT twin acts only as a kind of animatronic lovely that helps keep his brother a little more secure, his presence is masking/clouding things. The teachers probably get this and accept the notion of them as a set because it makes their lives easier. 

I just have to say that "animatronic lovey" is killing me. I love that.

And it's interesting you said that because I just asked DH last week after the first meeting if having W in class might be masking X's social and anxiety issues as far as the teachers and observers were concerned. (He said yes, it probably is, but that he thinks at this point it's helpful support and he really doesn't think it's harming either of them at this point.)

I do see your point for sure, especially as they get into elementary. However, DH feels *very* strongly about keeping them together for at least one more year. He feels like the transition to K is going to be overwhelming enough for X as it is, that separating him from his twin at the same time would push him over the edge and be detrimental.

Playing devil's advocate. If I had to make the choose, I'd do it now for a number of reasons. Where I am, the step up to kindie isn't as great as the one into first with the more rigorous academics and ramped up expectations around behavior and social skills. IME, kids sometimes do better split in kindie where there are expectations of having to support all kids as they transition. 

Ah, I never would have thought of that! I'll ask some local moms to see if that's true here as well. 

Plus, if his brother's presence in the class is calming or if teachers purpose him as an informal para for his brother (my experience in school with my mentally ill sister- I was called to her room or the office to settle her regularly because her teachers couldn't and I was closer than my mom) you could end up postponing the crash and burn (if there's one in your future) and the supports and services that might have been put in place a year earlier. 

Sorry you had that burden placed on you as a kid. So inappropriate. If we do keep them together, we'll definitely talk to their teacher about that and I'll try to do some volunteering in the classroom to see if any of this is happening. 

He feels like at this young age, especially since they seem to be doing so well in the same classroom and W doesn't seem to be taking on any inappropriate responsibility or doing too much scaffolding in the classroom, that having that security of someone familiar in the class might help X have a little extra security and confidence to develop those emerging social skills, and that he will then be more ready to separate in 1st. I see your point for sure, but I see his too. I'm conflicted, but leaning toward keeping them together just for K (ideally with them separated for part of the day, if possible, like they are now) and separate classes for 1st and beyond.

Totally your call to make. Just because they haven't been relying on his twin to scaffold or support in preschool (was this an integrated preschool? Are they headed to a mainstream classroom with general education teachers?

They have been in private preschool all along, though we switched to a different (and much better) private preschool for this year. In our old school district where X did have an IEP, they provided itinerant services since they didn't really have an appropriate public preschool placement for a child who was on track for speech and cognitive skills. They unfortunately don't have any integrated preschools here.

We are waiting for lottery results, but next year they will either be in an inquiry-based magnet school, or the public school we're zoned for, mainstream/general ed.