School/IEP/Auntie question

[mcribster]

Hi Auntie et all,
this is a weird one. So, the IEP team for DS has recommended 'neuropsych' testing for my son. The reason they say is because they can't come up with any goals on the IEP that are age appropriate- he has met all goals and is currently on a maintenance goal (he has one goal, just to maintain his current level of skills).

I agreed to neuropsych testing for which they are contracting out. Well the clinical psychologist just called me  and basically said they were doing an ADOS and AD1 to confirm or refute the autism diagnosis because 'they are questioning his dx'.

I'm thinking I should not go ahead with this ?  Am I right? I feel misled about the testing and he already has a dx which I don't want to drop yet.

Here is my current plan- DS is in daycare with 17 NT kids. His social delay is coming on w/o any services and he's caught up most days. He is down to one hour of SLP for which we are hanging on by a thread since he has no speech issues on paper. Given his current medical issues my plan was to hold him back from kindy (july birthday) for a year. I don't think we will need services next year.

Given that, I should pospone this testing, correct?

Please talk to me like I'm 5. I don't get the IEP stuff or the lingo. Thank you!

[typeset]

Well, given that the DSM-5 includes "or by history,"* his medical Dx isn't going anywhere.

What's at stake is the academic diagnosis. We've talked about this before. You want a private neuropsych or speech pathologist who will go in to observe and check out the quality of the interactions he's having and help you develop goals around that as well as a full battery of tests to tease out his strengths and weaknesses.

*Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text) ...

Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history ...

[mrsbuttinski]

Mar 9, 2015 11:06:13 GMT -5 mcribster said:

Hi Auntie et all,
this is a weird one. So, the IEP team for DS has recommended 'neuropsych' testing for my son. The reason they say is because they can't come up with any goals on the IEP that are age appropriate- he has met all goals and is currently on a maintenance goal (he has one goal, just to maintain his current level of skills).

If he's currently functioning at about the skill level expected of kids his age, they could leave the educational dx and drop the IEP. Or, they could agree to keep it in place on an itinerant support service. It's not unusual for kids in preschool to fit in pretty well with peers, the social and emotional delay gap is still pretty small at 4 and 5- a kid who is immature relative to peers isn't going to stand out as much as they will in a couple years. DS didn't even have a dx transitioning to kindie.

DS didn't get any real services on his IEP from mid-9th through graduation; he had a get-out-of-jail-free pass and itinerant support/training for his teachers. I agreed to this in order for the manifest determination protection in case DS did something spectacularly bone-headed or in case one of his teachers demonstrated a need for ASD training. The school agreed to it because it allowed DS's PSSAs (PA's older NCLB tests) to be reported with "Special Education Students" and inflate those a bit. The only place in the entire district where they struggle to meet the goals of NCLB is AYP among IEP stdents at the high schools.

I agreed to neuropsych testing for which they are contracting out. Well the clinical psychologist just called me  and basically said they were doing an ADOS and AD1 to confirm or refute the autism diagnosis because 'they are questioning his dx'.

Some of the most important pieces of IDEA are the procedural safeguards in place to keep a child from falling through the cracks. This works both ways, it allows the school to advocate for a child if the parents are not up to the task or are refusing to. IDEA also mandates a MFE when a child enters the school system, anytime there seems to be a significant change in presentation or if the child changes districts. This acts as a "second opinion" to protect the child against a dx that is no longer appropriate or perhaps never was. It happens. Sometimes a child is dxd very young and doesn't really meet the diagnostic criteria. Sometimes a parent will doctor-shop to get the ASD dx in order to access certain services that are only available or paid for with an ASD dx. 

DS's school psych re-did his ADOS when he bridged to public school in 4th grade even though I supplied the results of ADOS done in kindie and first. FTR, the first grade one was done by a world class dev pedi and the kindie one was done by the district's own ASD consultant. It's a safeguard to protect your child's right to LRE.

I'm thinking I should not go ahead with this ?  Am I right? I feel misled about the testing and he already has a dx which I don't want to drop yet.

If you refuse, they'll probably drop the eval. Being in MA, you can have a "stay put" done on the IEP which would keep what little is on it in place. Of course, this paints you as not being a collaborative member of the IEP team which could potentially bite you in the ass down the road. 

As typeset suggested, the district can't take away his medical dx. But they can say that it doesn't impact him educationally at this time. 

The other piece is your behavior in the public arena. MA is a pretty decent state for Sped services, but I do know of vocal parents who have complicated their advocacy by participating in adversarial advocacy groups. I have also known a few moms who were stalked on FB and had posts they've made related to how well their child is doing turned on them. If you are vocal in the biomed support groups locally, you might want to be sure not to post threads that could be used against you. 

IMHO, the more information you have on your child, the more effectively you can parent and advocate for him. In your situation, I'd be more inclined to participate in choosing what scales/tests are to be done in order to make sure they highlight your child's relative weaknesses. Vineland and BASC are good "go withs" to ADOS and ADI. You could also ask for CARS2, GARS or GADS. I also ask for an observation in a school setting that might reveal a need for services.

Here is my current plan- DS is in daycare with 17 NT kids. His social delay is coming on w/o any services and he's caught up most days.

So he's more or less holding his own socially. This could be because the social expectations of the age are so basic- nothing DS was doing at 4 and 5 worried his preschool teachers especially. He played cooperatively and had friends. He was an odd little kid, but didn't rise to the level of triggering an eval. Or it could be that he doesn't really have ASD- maybe he had a more generic speech or developmental delay and is largely caught up.

He is down to one hour of SLP for which we are hanging on by a thread since he has no speech issues on paper.

What was his speech issue? Expressive language delay? Artic? At 6 the more robust evals for pragmatics kick in. Even if you were to sit the neuropsych now, you could ask for that next year if it you wanted to explore this.

Given his current medical issues my plan was to hold him back from kindy (july birthday) for a year. I don't think we will need services next year.

Given that, I should pospone this testing, correct?

Have you shared this plan with his current team? Some places will go along with this plan. Other LEAs will deem redshirting a violation of his right to LRE (defining east restrictive as with same aged peers) and refuse to offer services in a preschool setting. If that's OK with you, you could write the letter requesting the MFE next January to get him re-evaluated in anticipation of his transition to kindie. Just be certain they are willing to start him in kindie if you redshirt- kindie isn't mandatory in MA.

Normally, closer to kindie is better for having a fresh eval in place, but the same risk of them not finding educational need for services will exist next year as it does now. There are kids who manage to make it K-12th with ASD and no IEP services. Rare, but it does happen.

Please talk to me like I'm 5. I don't get the IEP stuff or the lingo. Thank you!


You might want to read "Emotions to Advocacy"- it's a great book and very easy to understand.

[mcribster]

Mar 9, 2015 14:31:27 GMT -5 mrsbuttinski said:

Mar 9, 2015 11:06:13 GMT -5 mcribster said:

Hi Auntie et all,
this is a weird one. So, the IEP team for DS has recommended 'neuropsych' testing for my son. The reason they say is because they can't come up with any goals on the IEP that are age appropriate- he has met all goals and is currently on a maintenance goal (he has one goal, just to maintain his current level of skills).

If he's currently functioning at about the skill level expected of kids his age, they could leave the educational dx and drop the IEP. Or, they could agree to keep it in place on an itinerant support service. It's not unusual for kids in preschool to fit in pretty well with peers, the social and emotional delay gap is still pretty small at 4 and 5- a kid who is immature relative to peers isn't going to stand out as much as they will in a couple years. DS didn't even have a dx transitioning to kindie.

DS didn't get any real services on his IEP from mid-9th through graduation; he had a get-out-of-jail-free pass and itinerant support/training for his teachers. I agreed to this in order for the manifest determination protection in case DS did something spectacularly bone-headed or in case one of his teachers demonstrated a need for ASD training. The school agreed to it because it allowed DS's PSSAs (PA's older NCLB tests) to be reported with "Special Education Students" and inflate those a bit. The only place in the entire district where they struggle to meet the goals of NCLB is AYP among IEP stdents at the high schools.

I agreed to neuropsych testing for which they are contracting out. Well the clinical psychologist just called me  and basically said they were doing an ADOS and AD1 to confirm or refute the autism diagnosis because 'they are questioning his dx'.

Some of the most important pieces of IDEA are the procedural safeguards in place to keep a child from falling through the cracks. This works both ways, it allows the school to advocate for a child if the parents are not up to the task or are refusing to. IDEA also mandates a MFE when a child enters the school system, anytime there seems to be a significant change in presentation or if the child changes districts. This acts as a "second opinion" to protect the child against a dx that is no longer appropriate or perhaps never was. It happens. Sometimes a child is dxd very young and doesn't really meet the diagnostic criteria. Sometimes a parent will doctor-shop to get the ASD dx in order to access certain services that are only available or paid for with an ASD dx. 

DS's school psych re-did his ADOS when he bridged to public school in 4th grade even though I supplied the results of ADOS done in kindie and first. FTR, the first grade one was done by a world class dev pedi and the kindie one was done by the district's own ASD consultant. It's a safeguard to protect your child's right to LRE.

I'm thinking I should not go ahead with this ?  Am I right? I feel misled about the testing and he already has a dx which I don't want to drop yet.

If you refuse, they'll probably drop the eval. Being in MA, you can have a "stay put" done on the IEP which would keep what little is on it in place. Of course, this paints you as not being a collaborative member of the IEP team which could potentially bite you in the ass down the road. This is helpful. I may ask for that.  I asked that we have an IEP meeting so that we can meet as a team to discuss our plans next year and our hope to enter kindy at age 6. I rescinded my permission to evaluate until we can met as a team. My vision is that we give him one more year and then he can enter w/o supports but I would like to have him evaluated prior to this to make sure I'm not deluding myself.

As typeset suggested, the district can't take away his medical dx. But they can say that it doesn't impact him educationally at this time. 

The other piece is your behavior in the public arena. MA is a pretty decent state for Sped services, but I do know of vocal parents who have complicated their advocacy by participating in adversarial advocacy groups. I have also known a few moms who were stalked on FB and had posts they've made related to how well their child is doing turned on them. If you are vocal in the biomed support groups locally, you might want to be sure not to post threads that could be used against you. I'm not adversarial. I'm pretty happy with them actually. It was clear to me that they could not provide much (2.5 hours a day) so that's why we did biomed. You can't get blood from this stone and as it played out, we did not need it anyway. I am open about DS medical issues and that's what's driving me to hold him one more year - I don't think he can handle the demands of the week yet (needs nap, crashes mid week, etc). We have kept this all off line, most don't know he has a dx.

IMHO, the more information you have on your child, the more effectively you can parent and advocate for him. In your situation, I'd be more inclined to participate in choosing what scales/tests are to be done in order to make sure they highlight your child's relative weaknesses. Vineland and BASC are good "go withs" to ADOS and ADI. You could also ask for CARS2, GARS or GADS. I also ask for an observation in a school setting that might reveal a need for services.

Here is my current plan- DS is in daycare with 17 NT kids. His social delay is coming on w/o any services and he's caught up most days.

So he's more or less holding his own socially. This could be because the social expectations of the age are so basic- nothing DS was doing at 4 and 5 worried his preschool teachers especially. He played cooperatively and had friends. He was an odd little kid, but didn't rise to the level of triggering an eval. Or it could be that he doesn't really have ASD- maybe he had a more generic speech or developmental delay and is largely caught up.

He is down to one hour of SLP for which we are hanging on by a thread since he has no speech issues on paper.

What was his speech issue? Expressive language delay? Artic? At 6 the more robust evals for pragmatics kick in. Even if you were to sit the neuropsych now, you could ask for that next year if it you wanted to explore this. We began with MERD. He no longer has a delay based on the preschool language test that they do but pragmatics and social communication are still what we work on. I would say he communicates typically about 70 percent of the time. We'll go from complete sentences/back and forth conversation for a week and then have a PANS flare and he's back to one or two word sentences, not responding to his name, no playskills, etc. That lasts about 4-7 days and then he's good again. He does not have a fever or get sick as a typical kid- we see waxing and waning of ASD (and now tics as well).

Given his current medical issues my plan was to hold him back from kindy (july birthday) for a year. I don't think we will need services next year.

Given that, I should pospone this testing, correct?

Have you shared this plan with his current team? Some places will go along with this plan. Other LEAs will deem redshirting a violation of his right to LRE (defining east restrictive as with same aged peers) and refuse to offer services in a preschool setting. If that's OK with you, you could write the letter requesting the MFE next January to get him re-evaluated in anticipation of his transition to kindie. Just be certain they are willing to start him in kindie if you redshirt- kindie isn't mandatory in MA.

I have spoken to all team members privately about my wish to hold him one year before starting him. It seems as if it is an option so the next plan is to meet as a team about this plan and maybe see if we can hold the IEP open and/or reevaluate next spring. I think the time will really help him.

Normally, closer to kindie is better for having a fresh eval in place, but the same risk of them not finding educational need for services will exist next year as it does now. There are kids who manage to make it K-12th with ASD and no IEP services. Rare, but it does happen.

Please talk to me like I'm 5. I don't get the IEP stuff or the lingo. Thank you!


You might want to read "Emotions to Advocacy"- it's a great book and very easy to understand.
Thank you. I am a web MD but upon the words IEP my mind goes completely blank. I hate this stuff. Thanks for your patience with me

[mrsbuttinski]

mcribster said:

I asked that we have an IEP meeting so that we can meet as a team to discuss our plans next year and our hope to enter kindy at age 6. I rescinded my permission to evaluate until we can met as a team. My vision is that we give him one more year and then he can enter w/o supports but I would like to have him evaluated prior to this to make sure I'm not deluding myself.

Sounds like a good plan to be upfront and have this discussion now so you can plan for next year.

I'm not sure how realistic it is to enter kindie with the expectation that he won't need supports or services. TBH, the expectations are considerably higher in kindie and first than preschool. Kindie and first is the time when a lot of higher functioning kids without language delays are first identified.

I am open about DS medical issues and that's what's driving me to hold him one more year - I don't think he can handle the demands of the week yet (needs nap, crashes mid week, etc). We have kept this all off line, most don't know he has a dx.

We began with MERD. He no longer has a delay based on the preschool language test that they do but pragmatics and social communication are still what we work on. I would say he communicates typically about 70 percent of the time. We'll go from complete sentences/back and forth conversation for a week and then have a PANS flare and he's back to one or two word sentences, not responding to his name, no playskills, etc. That lasts about 4-7 days and then he's good again. He does not have a fever or get sick as a typical kid- we see waxing and waning of ASD (and now tics as well).

The lack of stamina is an issue. Is this a full day or half day program? I know this is a Lymes thing, but it can also be an ASD thing associated with hypotonia. More exercise can help the latter in terms of stamina. Some people do this under the care of a PT; we bumped up DS's activity level.

The tics are tough. Not sure how PANS/PANDAS ticking is different than more garden variety types. Tics usually reveal around 5-8 and get worse over time until about puberty.

Separating out the PANS, you seem awfully focused on speech as a barometer of how he's doing. This may or may not be appropriate. ASD is more than speech.

Because most of the kids I know best carry an AS dx, speech was never really on the table as a concern at this age. Sure, some of DS's language was different, but he could get his needs across verbally, manipulate, enjoy puns, etc. TBH, the biggest differences were in his ridiculous vocabulary and the precision of his speech.

I have spoken to all team members privately about my wish to hold him one year before starting him. It seems as if it is an option so the next plan is to meet as a team about this plan and maybe see if we can hold the IEP open and/or reevaluate next spring. I think the time will really help him.

What they say off the record may not prevail. Do you know other families in your district who have done this. They'd be a great resource for finding out how to best pull the redshirt thing off.

It's hard to say. My kid has an August birthday and we chose to redshirt for a number of reasons. He was clearly less mature than his preschool classmates, he was less engaged in the seated writing centers than the more play-based ones. Plus, he was to be bridging to a full day program that was seriously academic before lunch and mostly play-based after. His preschool teacher supported my thought that it was best for DS to do another year of preschool.

I would say the results were mixed. On one hand the extra year was useful on the front end and the back end. In between, not so much. For us, the choice probably delayed his dx and interventions by a full year. Because DS presents as so many with AS do- no speech or adaptive delays- but with a delay in social and emotional maturity of ~ 1/3 chronological age the buffer redshirting offered pretty much disappeared mid-first and continued to grow until about his junior year of high school when most typical kids slow down around this development.

His level of IEP accommodations and supports sort of followed the trajectory of this skills gap. He had his first IEP for social skills/pragmatics only for 2nd and 3rd. We added more robust supports around executive function and differentiated instruction in 4th through 8th, and then dropped down to consultant services until graduation at 18. He did not register with disability services in college. I would say that most of the kids in my district with AS/HFA, even those who started out in self contained ABA or AS classes with the IU tend to start some mainstreaming by the intermediate grades and are primarily mainstreamed by middle or high school with very little in the way of supports. This is also what I am seeing among my friends who live in Boston, DC, Baltimore, Los Angeles, San Diego, Birmingham, and St. Paul.

[mcribster]

Thank You, Auntie.