IEP Change from Developmental Delay to Narrower Label (Speech Impairment)
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Anonymous
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Our DS, age 6, has had an IEP since age 3 for developmental delay. That label can't extend into age 7, and it's time for his triennial IEP review. At eligibility meeting, school suggested to change the label from developmental delay to speech/language impairment. Although that's one aspect of his issues, it doesn't nearly capture all of them. School says if he's found eligible, he'd still be able to continue getting educational and OT services under a speech/language label in the IEP. Does anyone have experience with this being the case?
I've long suspected DS has high functioning autism (probably aspergers). His issues concern focusing/attention/organization, pragmatic speech, perseveration, social skills, difficulty with abstract concepts, overly sensitive to sounds, significant fine motor delays and less severe gross motor delays. His strengths are excellent memory for rote information and spelling, reading above grade level (though comprehension is questionable), and pretty good ability to generate ideas in writing (handwriting is terrible, but the content is on point). This is a kid who memorizes and perseverates on calendars, maps, names of presidents, car makes/models, street names - you get the idea. His teacher, who has been teaching for many years, also has expressed, when I raised it, that she sees HFA traits in him. The school only did speech and OT testing this year, and recommended deferring cognitive and academic testing until next year, because his reading/writing/spelling currently are above grade level (concern that this might reduce what services for which he'd be eligible for 1st through 3rd grade). Still, there are so many issues that impact his ability to access the curriculum, and "speech impairment" doesn't nearly seem to capture them all. Has anyone else been in a similar situation when transitioning from developmental delay to a different label? If so, what did you do, and how did it go? A related question is whether we should wait to have the school test DS for autism - which would be sometime in the late Fall - or whether we should just do it sooner privately. We did have DS evaluated for autism at NIH at age 3 - he was borderline but not diagnosed because of his level of engagement/eye contact with the evaluator. They indicated this didn't preclude a diagnosis when he's older. Another option is we could test privately for ADD/ADHD (school said diagnosis must be from medical doctor) - if he is (very likely), then he could qualify for services under the OHI label. I'm trying to figure out how to approach the label and testing - globally (possibly autism) or piecemeal (speech and/or possibly ADD). TIA for any advice or anecdotes you might have. |
Anonymous
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I strongly suggest getting outside testing and not relying on the school's testing. My experience is with ADHD but our diagnosis was from a neuropsychologist, not an M.D., and was accepted by MCPS.
The above-grade-level thing is a common excuse but I don't think it's legitimate. We fought it, too, successfully, but we used an educational consultant which was extremely helpful. I would not rely on the school to take the appropriate steps to help your child without your prodding and support from experts. |
Anonymous
| Federal law does state you can be developemental delay until 9 or 10 and I have been told by an advocate that federal law trumps state law. So if you really want to stay put with developmental delay, I think you can. If I'm wrong, someone please chime in. That being said, I think if you can get the Ohi label, get it. I've been told it is a lot more flexible for getting services. Maybe see a developmental ped for diagnostic work-up? |
Anonymous
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OP again - thank you so much! Question: if we stay put for now and seek outside testing for autism and/or ADHD when can we raise this? The full-blown triennial IEP meeting is supposed to be in March, but we've deferred agreeing to the "label" for now. Perhaps the best approach is to "stay put" under DD, have the IEP meeting, then call for a follow up IEP meeting once we get back results of our testing?
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Anonymous
| I would definitely not wait nor rely exclusively on the school testing. They determine diagnoses based on academic impact, so if he isn't developing social skills for example, they won't address this. I would get a neuropsych exam which is expensive but this way you'll have a full understanding of what you're dealing with. You may also want to consider a social skills group. |
Anonymous
| OP again - I actually do think he has academic issues now with understanding concepts vs. memorizing facts. I think academic testing would show that he has issues with reading comp, math concepts, etc. For example, although the school's speech assessment shows he is slightly above average for vocabulary, he's well below average for comprehending sentences. Although he can memorize 8+7=15, he has trouble understanding why 15 is the answer. He's currently above grade level for reading (i.e., decoding), spelling and basic writing, and he's technically at grade level for math, but I think he's at risk for falling behind when things ramp up in 1st/2nd grade onward and there's more emphasis on abstract concepts. |
Anonymous
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My son has MERLD and has a lot of the issues you raise. Language, particularly receptive language, will impact a child across many facets, including reading, comprehending other academics, social skills, pragmatics and often fine motor. Schools typically don't have a lot of expertise in differential diagnosis -- that puts EVERY possible Dx on the table to find the best match. From the best label comes the best matched services for your child. I'd go to outside sources, and check who ever is evaluating your child to truly understand their training and their accuracy rates. Our school initially pushed hard for a "educational autism" label until about 2nd grade...when they said, wait, you're right, this is a severe language disorder, not autism. Since then, his academics have taken off. And he gets all the same resources with the language label as we would with the autism label. |
Anonymous
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Thanks 13:42 - I hadn't considered MERLD, but it seems like this could be a possiblity. The speech eval showed low average receptive language ability (and slightly above average expressive language ability). I'm inclined to agree with everyone's suggestions to pursue outside testing.
Question: what is it about the "correct" label that caused your DS's academics to take off? Were services increased or better targeted as a result of the label (or more specifically, as a result of the testing that was involved in determining what the label should be)? |
Anonymous
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Anonymous
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In my experience (and that of many of my friends' whose children have language disorders), once a child has an autism or ASD label, absolutely everything they do is seen within that prism. So they would try to force eye contact, for example, a bad idea for kids with MERLD (maybe even kids with actual autism!) An ASD label also leads often to separate classrooms in my district as well. They misinterpret a lack of friends as lack of social desire or a lack of social understanding. In reality, my son couldn't keep up with the conversations, so he shut down, making him SEEM uninterested socially. But bring him into a setting with one or two children, and his social skills come out. His pragmatics are weak because his overall language is so weak. He has trouble attending in class because he can't hear what the heck is going on in the cacophony of 28 kids. His language has been repetitive at times because he's so eager to try to engage you and he's using the only language he has. He has some anxiety because he's very aware how affected his language skills are. Once the school team stopped trying to convince us he had autism, they started implementing our experts' recommendations for his IEP, focusing on reading and math, zeroing in on reading comprehension (read a page, then immediately talk about it. act it out. get it into the visual memory instead of the very weak auditory memory.) THese things made the difference. They also FINALLY put together a Behavior Intervention Plan we'd been asking for for two years that worked right away (after 2 years of complaints about his behavior). We don't even use the plan anymore. They also started switching his overall curriculum to be more visual instead of auditory. Teachers have NO IDEA how much time they spend talking, so many kids learn by doing and seeing. |
Anonymous
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Wow, thank you so much for this eye-opening post. Our DS too has a great visual memory and responds well to pictures, words, etc. but does have trouble with auditory processing. The strategies you mention sound like they could help in our case too. I'll definitely have to probe the MERLD/auditory processing piece with more specificity.
In your DS's case, is his IEP for speech/language impairment, or is it a different category? If we go the speech impairment route for the IEP, I think we'll still need to get an outside eval of the attention/focusing piece too. THANK YOU again for your insights! |
Anonymous
| 14:55: one more question - did your DS have an auditory processing evaluation done by an audiologist, whether through the school or privately? |
Anonymous
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My youngest (in K) has a MERLD diagnosis and is currently eligible under DD. I appreciate the info the PPs have provided because it's likely we're going to be in a similar position to OP in a couple years. My question for OP is - have you considered contacting the research team and asking if they'd do a follow up? What about a different NIH study? We, too, participated in one when DS was 2.5 and found it immensely informative. There are a few studies out there currently recruiting kids your DS's age.
http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_06-M-0065.html@autism http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_10-M-0027.html@autism http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_10-CH-0084.html@autism#contacts http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_09-M-0171.html@autism |
Anonymous
| 1455, 1342 -- are either of you available to to chat offlist by email about your situation? Mine is similar and have some questions. Thanks |
Anonymous
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1342 and 1455 here. I did not have our child go through the auditory processing evaluation. The Vanderbilt folks saw the weakness immediately, but he was too young to test at the time at 5 years old. Audiologists prefer a child to be at least 7 or 8. The other thing is, what to do with that information? So often folks run off to use FastForward, but it's an expensive, time-consuming therapy with no SCIENTIFIC proof that it makes a difference. (There is a lot of anecdotal evidence). I do know that some people use FM systems in the classroom with some success. Also, my son has a speech and language impairment label. Another possibility was an LD label, as he has a co-morbid processing speed issue. With the language label, he gets an IEP, an in-classroom aide for academics, pullouts, a modified curriculum. On Facebook, if you search for MERLDworld, you'll find a group of parents there. The leader of the group has elementary age children and does a lot of research on MERLD. I believe she has a web site as well. The www.naturallatetalkers.com board has a lot of information as well, although it tends to skew toward the preschool age kids. The middle school, high school and college age kids I know with MERLD still tend to have receptive weaknesses, but they've learned to compensate by translating quickly the auditory to visual in order to be able to remember it. They also tape lectures, learn good note taking, and tend toward hands-on classes and occupations. |