Special Needs

Can the school district deny services even with a medical diagnosis?

A week ago DS (3 years old) got diagnosed with ASD, Level 1. He is very high functioning with very mild presentation (at the moment). But the specialists did recognize his differences in social skills and play. I mean ... we did get an official ASD diagnosis!

This morning a person came from Child Find (associated with the school district) to talk to us about options. Currently, DS is in a day care and for now is doing well there, but the day care is not part of the public schools. It is a great place to be, I love the teachers and the attention DS gets there, but we are looking at a possibility switching to a public preschool, were there advantages in terms of services. So the lady came to my home this morning and she was apparently expecting to see a different kid. She said she did not expect to see such a high functioning kid... DS is highly verbal and smart and can be engaging.. So this lady basically went on to tell me that he will have to be assessed by the school and then they will decide if he is eligible for any services. She didn't say it out loudly, but she hinted me at every step that he probably won't qualify. A team od specialists at the Autism Clinic observed and interacted with my kid for over 4 hours, and this lady comes to my house, and based on what she sees in 20 minutes she dismisses his diagnosis?? I asked her about an aid in a mainstream classroom (that's what the eval team suggested would be the best for DS). She said it may be possible, but we won't know until they are done with all their testing, which will take 2+ months. Frustrating! I know at the moment DS would benefit from an OT, at least...

Have any of you mommas been in a similar situation? What did you do, and what was the turn out? I am determined to get for my DS whatever he needs, I just need to learn all the loopholes ...
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Re: Can the school district deny services even with a medical diagnosis?

  • Also, can anyone recommend a book that will help me teach DS anything Theory of Mind related?
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  • blondegirl74blondegirl74 member
    edited July 2014
    From what I understand services are based on educational need not just medical diagnosis. Also, the school district will do there own evaluation to determine this. I'm sure there is more to this, but that's my understanding thus far ( only been at this for a year : ) my son is very high functioning too and he was place in a prek class last year for developmental disability. Only 3 in his class of 11 had ASD. He was not offered speech in the traditional sense or OT.
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  • From what I understand services are based on educational need not just medical diagnosis. Also, the school district will do there own evaluation to determine this. I'm sure there is more to this, but that's my understanding thus far ( only been at this for a year : ) my son is very high functioning too and he was place in a prek class last year for developmental disability. Only 3 in his class of 11 had ASD. He was not offered speech in the traditional sense or OT.
    Do you think it was a good fit for him? Where we live the options are pretty thin. They have one classroom for developmentally delayed kids, but most have pretty severe disability. I am afraid there are no role models for DS there, which is something he really needs. Arghh, sucks to be stuck in a small place. Is your son in private therapies as well, or is he doing well with the school only?
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  • It was a really good fit for him as many of the kids were typical socially, so he still got some good role models, but also the very structured educational setting. He has only had private music therapy but we are considering some type of behavior therapy soon and he will do social skills this fall in school and privately.
  • McRib said:
    yes. they can.  we did not get ESY even though DS has an ASD dx.
    I thought if we got him a dx, things will be easier. Sucks! So is your DS in private therapies?
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  • DC2London said:
    They can.  And they will insist upon doing their own testing, even if the tests they administer are identical to the ones given at the Autism Clinic (at least that has always been my experience).


    The lady said she won't repeat the tests that the Autism Clinic already administered (I am not sure I believe her). As for the diagnosis criteria.. the school system is still using DSM-IV, and of course, it is still subjectively how they decide if his eye contact is good or not ... 
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  • newbee36 said:
    McRib said:
    yes. they can.  we did not get ESY even though DS has an ASD dx.
    I thought if we got him a dx, things will be easier. Sucks! So is your DS in private therapies?

    DD didn't qualify for ESY, in our case yes, we are doing private OT and ST. Speech is at the same location that provides her school year services and does her SN preschool through the school system.
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  • -auntie- said:
    newbee36 said:
    Short answer to your question? Absolutely.

    A week ago DS (3 years old) got diagnosed with ASD, Level 1. He is very high functioning with very mild presentation (at the moment). But the specialists did recognize his differences in social skills and play. I mean ... we did get an official ASD diagnosis!

    I know a lot of kids with this sort of presentation who didn't require educational support in the preschool years. I know a few kids who attended private and charter schools who never had Section 504 or IEP supports in place. My own kid's IEP contained only itinerant support of his teachers and a golden ticket hall pass in high school. When he was your son's age, he was doing pretty well in a mainstream preschool.Given your description of your son and your dev pedi's idea that NT peers would be his best for social growth, his current setting could not only be appropriate for him, it could be the best option.

    First, thanks for your input Auntie. I was hoping to hear from you. I do feel that at the moment the day care is the best placement for DS, but I guess I am looking more into the future. Though as you mention further down - what still does not exist, can not be addressed.

    This morning a person came from Child Find (associated with the school district) to talk to us about options. Currently, DS is in a day care and for now is doing well there, but the day care is not part of the public schools. It is a great place to be, I love the teachers and the attention DS gets there, but we are looking at a possibility switching to a public preschool, were there advantages in terms of services.

    If I were you, I'd go theough the process and see what's offered before deciding to change schools.

    We will definitely wait and see and check out all the options before we make a step in that direction.

    So the lady came to my home this morning and she was apparently expecting to see a different kid. She said she did not expect to see such a high functioning kid... DS is highly verbal and smart and can be engaging.. So this lady basically went on to tell me that he will have to be assessed by the school and then they will decide if he is eligible for any services.

    I don't know why she was gobsmacked. A lot of kids with an Aspergers-like presentation read as pretty capable in the occupation of student. I 3 and 4, DS just pretty much looked smarted than his teachers. Now that he's an adult, I'm pretty sure he was. That said, a lot of kids who are as you describe your son don't have so proactive a parent as your does. Mine sure didn't at 3.

    Mine does, because I became aware of Autism shortly after DS was born. I just can not see any good at the moment of being proactive.

     She didn't say it out loudly, but she hinted me at every step that he probably won't qualify. 

    This is why it's great it's not her call to make without a team. In your situation, I would ask for the eval and would pay particular attention to the scales used. A BASC-2 and Vineland, with parent and teacher questionaires,  might help tease out his social and emotional delays. An observation in his current preschool could also support educational need around interaction- if he's a loner at free play of recess, this should be when they see him. But I'll be honest, the bar for preschool skills is so low, a lot of kids with AS-like ASD and things like ADHD don't qualify until they're a bit older.

    Thank you for the tips and pointers. I will be checking the eval meticulously, making sure they got everything that I see there. DS is not a loner, but often interacts inappropriately. For example, if he doesn't feel like talking, he would respond with made up words to anyone. This includes his peers; He doesn't respect other people's boundaries (they are helping him with this at the day care); and he does not recognize when someone has had enough of him; I see all these as problems, and I hope the evaluators recognize these as such as well. 

    A team od specialists at the Autism Clinic observed and interacted with my kid for over 4 hours, and this lady comes to my house, and based on what she sees in 20 minutes she dismisses his diagnosis?? 

    I know she probably came off as dismissive to you. But I don't think she was dismssing his dx. It sounds more like she was preparing you for the possibility that he won't qualify for educational services at this time.

    That may be true.


    I asked her about an aid in a mainstream classroom (that's what the eval team suggested would be the best for DS). She said it may be possible, but we won't know until they are done with all their testing, which will take 2+ months. Frustrating! I know at the moment DS would benefit from an OT, at least...

    This is all true.

    In most states, districts are required to follow the federally mandated IDEA timeline of 60 instructional days in which to evaluate a child with a disability and another 30 to decide if he qualifies for services and to start the ball on deciding what they may be. If you signed the consent form today and got the procedural safeguards brochure, the clock started today.

    You can expect a lull before they start. The district will be on a tighter schedule for students who already have IEPs from outside districts. 

    When we bridged DS to public school for 4th, I requested an eval in February that wasn't completed until late November; I signed the IEP during the Christmas Party.

    One of the things that honks me about many dev pedis is their ignorance of how IDEA works. It's pretty common for them to suggests a gold standard laundry list of services for all kids they dx. I've seen some pretty pie-in-the-sky to the point of delusional suggestions in my day. Even from DS's own world class dev pedi.

    The district will look at your son in the context of his occupation as a student and determine what his educational needs are- only then will they create goals to get him toward the skills he needs relative to the standards of his age. Only after the goals are written will the services, along with the all-important who and how to get to the goals will be addressed. Asking for an aide now is putting the cart before the horse. You mention OT; why do you feel he should get OT services? Does he have sensory issues or fine motor delays? Are you certain there's an educational need at this time?

    Thanks for explaining everything so clearly. I guess I put the cart before the horse because that's what I was told would be the most beneficial for my son. I feel OT will help him, because it has in the past, he was getting OT through EI. He doesn't have any significant sensory issues, but it was to target play. The therapist went to the day care twice a month, and played with DS there, while working on appropriate interactions with the other kids there as well. I think his play skills have vastly improved.

    Have any of you mommas been in a similar situation? 

    I have a kid who seems really similar to yours. 

    What did you do, and what was the turn out? 

    Because we didn't have a dx at 3, he attended a great little coop preschool where he thrived. From there he attended a smaller Episcopal Day School which was a poor fit for him, in part, because of how mediocre the teachers were and how age inappropriate the curriculum was. He didn't get school district services until he was in 2nd grade- SLT around Social Thinking. We enrolled him in a private reading lab school for a couple years to repair his dyslexia- the district's offerings around this weren't as robust as we'd have liked for DS. He bridged to 4th with an IEP that was primarily focused on social skills and executive function glitches associated with both AS and ADHD.

    How'd it work out? He's a college junior with a great GPA. Some of the kids from his coop preschool were his friends through graduation.

    I am glad your DS is doing well. That gives hope to all of us with young children.
    Since there aren't many options for DS's age group, me and DH try to do playdates as often as we can (2-3 times a week), with several different kids (while I typing here, DH and DS are at the park on a playdate).

    I am determined to get for my DS whatever he needs, I just need to learn all the loopholes ...

    There are no loopholes. It's would also be useful to try not to use the language of battle in this process either. Your son will be better served if you can work collaboratively with your district.

    I know. Honestly, I didn't mean to use the language of battle, but sometimes I just don't know better (After 8 years in the states I still have difficulties differentiating rude from not-rude). Otherwise I try to be nice, and I think I am for most of the time (:))

    It's very possible he'll assess very differently than he appreared in the safety of his own home. It's also possible he doesn't have an educational need at this time, but will by kindie or later in the primary grades. That can happen. Unfortunately, even though we can probably anticipate issues as he gets older, the district can not craft an IEP to address potential delays.

    He would have another eval for Kindy if necessary though, right?

    As member of the CSE/CST, you can share your concerns with the rest of them team about how he is impacted educationally. Make sure they give a robust eval and observe him during the situations where his social needs are most obvious- like if he can't sit during morning circle time or never interacts with peers on the playground.

    I will make sure they observe the behaviour I am concerned about. Thanks Auntie!


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  • -auntie- said:
    newbee36 said:
    Also, can anyone recommend a book that will help me teach DS anything Theory of Mind related?
    Michelle Garcia Winner has some social skills materials that touch on ToM. "Thinking About You, Thinking About Me" probably focuses more on that than any of the other series. 


    This was one of the first books DS's SLP used with him. That said, ToM isn't a zero order skill at 3, so it may not be the sort of thing a very young child will catch on to. Most NT threes and many fours still have this concept as an emering one.
    Thanks, I will first check the library.
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  • typesettypeset member
    edited July 2014
    I'm basing my advice off workshops I took through AANE (aane.org) on the IEP process and HFA/Asperger's. 

    The more information the team has, the better. When you consent to evaluate, there's usually an inch for parent input on the form. You want to write "see attached" and then include a letter outlining all of your concerns about his development. Fine motor, gross motor, sensory, expressive, receptive, pragmatic, play, behavioral. 

    Then you link these to the state preschool standards. You can find the areas relevant to the diagnosis to bring to the discussion. Anything about working together, asking questions to seek information, circle participation ... he struggles with X and therefore can't meet standard Y without direct instruction, assistance, etc. 

    The other thing to do with your consent is request in writing that the team observe him in structured and unstructured settings. The BCBA from our program observed the kid at two daycares, at home, and during a classroom visit to the preschool. OT saw him 1:1 and in the daycare setting. Speech saw him 1:1 and at the daycare. If you've outlined your concerns with your consent, you can steer them toward what you need them to see. Given that there is no standardized pragmatic language assessment for this age and my kiddo is off the chart expressively and receptively, it was very, very useful to outline all of his verbal quirks ahead of him sitting down with the SLP. Someone should look at his play using the Westby Play Scale. The BCBA did for us. That'll tease out relevant delays for the preschool setting given that their work is through play at this age.

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  • We were able to use one pragmatic scale, the Language Use Inventory (LUI). It's parent report, so they might try to brush it off. Our EI SLP ran it with us. 
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  • typeset said:
    I'm basing my advice off workshops I took through AANE (aane.org) on the IEP process and HFA/Asperger's. 

    The more information the team has, the better. When you consent to evaluate, there's usually an inch for parent input on the form. You want to write "see attached" and then include a letter outlining all of your concerns about his development. Fine motor, gross motor, sensory, expressive, receptive, pragmatic, play, behavioral. 


    Then you link these to the state preschool standards. You can find the areas relevant to the diagnosis to bring to the discussion. Anything about working together, asking questions to seek information, circle participation ... he struggles with X and therefore can't meet standard Y without direct instruction, assistance, etc. 

    I am starting to prepare "see attached". Now. Thank you so much for this advice, I see it useful already.

    The other thing to do with your consent is request in writing that the team observe him in structured and unstructured settings. The BCBA from our program observed the kid at two daycares, at home, and during a classroom visit to the preschool. OT saw him 1:1 and in the daycare setting. Speech saw him 1:1 and at the daycare. If you've outlined your concerns with your consent, you can steer them toward what you need them to see. Given that there is no standardized pragmatic language assessment for this age and my kiddo is off the chart expressively and receptively, it was very, very useful to outline all of his verbal quirks ahead of him sitting down with the SLP. Someone should look at his play using the Westby Play Scale. The BCBA did for us. That'll tease out relevant delays for the preschool setting given that their work is through play at this age.

    They will observe him at the daycare and at home. Possibly at a playground.
    They will observe him several times for couple of hours at least, so I really hope they notice his differences.  I definitely have to direct them to DS's language quirks. As far as BCBA goes, I am not sure if we have representatives here. We really leave at the end of the world and even further. 


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  • typeset said:
    We were able to use one pragmatic scale, the Language Use Inventory (LUI). It's parent report, so they might try to brush it off. Our EI SLP ran it with us. 
    See, I have not even heard of LUI. I have so much more to learn. 
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  • what about ABA?  has that been suggested? or a social skills group?


    ABA has been mentioned (possibly 8 hours a week, they mentioned), but we have no providers in the area. We have not closed that chapter completely, but for now at least it is not a front runner. Social skill groups, yes! That was highly recommended. Again, no such thing here for kids younger than 5, but we are considering commuting possibly. I am waiting to hear from a place that have social groups.
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  • -auntie- said:
    newbee36 said:

    I do feel that at the moment the day care is the best placement for DS, but I guess I am looking more into the future. Though as you mention further down - what still does not exist, can not be addressed.

    Hold onto that thought. One of the best pieces of advice I ever got was to look at where I wanted DS to be in 5 years and work on the skills he'll need to be successful there. The school will only address age appropriate and educational/transitional skills, but you can fill in around that.

    Intuitively, it sounds like the right thing to do, I will keep that in mind. 

    Mine does, because I became aware of Autism shortly after DS was born. I just can not see any good at the moment of being proactive.

    I can see pluses and minuses to both scenarios. DS was dxd in a different world- Y2K- back when his dx was considered a rare one. His dev pedi called in all his fellows and residents for our appointment because based on the paperwork he was pretty certain DS would get an Aspergers dx and he saw this as a rare opoortunity to meet such a rare and exotic creature. These days I can't go to the vet or get my brows waxed without a conversation about ASD.

    On one hand it was great to have almost 7 years without the SN label. On another, later meant we got a more complete dx because of his age with accurate IQ testing, good levels of pragmatics and a hx of being relatively successful in the mainstream. When kids get a dx at a very young age, there's a greater risk of comorbids revealing over time which can be demoralizing. That said, we did add dyslexia at 8, depression at 11 and GAD as an adult.

    That said, knowing he's at risk of certain deficits, you can help prepare him to work around them.

    I understand. There are things we can work on now, to improve the outcome in the future. He is so afraid of failure and does not want to attempt something until he has calculated in his head that he can do it correctly.. Unlike any other 3 year old that would just go for it and try... I see this as a source of anxiety in the future. DH's level of anxiety is pretty high, though he is not diagnosed with anything. DH also has depression. I am trying really hard to teach DS that it is OK to fail sometimes, that we are not always successful. 

    Thank you for the tips and pointers. I will be checking the eval meticulously, making sure they got everything that I see there. DS is not a loner, but often interacts inappropriately. For example, if he doesn't feel like talking, he would respond with made up words to anyone. This includes his peers; He doesn't respect other people's boundaries (they are helping him with this at the day care); and he does not recognize when someone has had enough of him; I see all these as problems, and I hope the evaluators recognize these as such as well. 

    A good speech program, especially Michelle Garcia Winner, can address a lot of this stuff. He's too young for the gold standard pragmatics scales (TOPL-2), but you could look for glitches in pronoun reversals (me/you, him/her, etc. DS reversed ask/tell as well), prosody, inflection and code switching (using vocabulary appropriate to his audience- DS sounded like some BBC narrarator as a little and then swore in front of grandparents and teachers). Look also for his ability to identify emotions in others. Can he do conversational volleys? IDoes he have any echolalia? Think social communication- not necessarily speech. 

    DS sounds like a BBC narrator! He definitely uses vocabulary not age appropriately. No baby language in this house. No pee-pee, no potty, .. We have penis, toilet, .. instead. He does have little echolalia since recently. He sometimes repeats the question before answering. One surprising thing to me is though that he is great with personal pronouns. He has down well you, me, he, she, his, hers, ... 

    Thanks for explaining everything so clearly. I guess I put the cart before the horse because that's what I was told would be the most beneficial for my son. I feel OT will help him, because it has in the past, he was getting OT through EI. He doesn't have any significant sensory issues, but it was to target play. The therapist went to the day care twice a month, and played with DS there, while working on appropriate interactions with the other kids there as well. I think his play skills have vastly improved.

    He shouldn't be tying up an OT (there aren't enough to go around) to learn appropriate play skills. That's something you could very easily do yourself at home. Floortime is very well suited to parent led teaching of play. We did Floortime when DS was initially dx'd under the direction of his psychologist- an hour a night every night. If you don't have someone to guide you locally, use the books.

    https://www.amazon.com/gp/product/0738210943/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=0738210943&linkCode=as2&tag=om057-20

    I have this book already and reading it. I think I saw it a while ago you recommended it to someone. I understand I shouldn't hug the OTs and "still" services from other kids that are more in need. I would not want to do that. But our EI OT insured me that that was not the case, that all the kids that needed their services, are getting them.


    I am glad your DS is doing well. That gives hope to all of us with young children.
    Since there aren't many options for DS's age group, me and DH try to do playdates as often as we can (2-3 times a week), with several different kids (while I typing here, DH and DS are at the park on a playdate).

    Playdates are a great idea. We always had this as a weekly homework assignment. As DS got older this became harder to arrange since school aged kids take over their own social lives pretty early on which meant on the socially "undesirable" types would still allow parents to do this. By then we were doing scouting and later music to keep DS engaged with more typical and appealing peers.

    For now the playdates are going reasonably well. I do fear that one day when the kids will choose to play with someone else instead though. But, let's focus on the present and work on it.

    He would have another eval for Kindy if necessary though, right?

    He should. He can also have a new eval if new issues reveal. You can also ask for certain scales to be done as soson as he's old enough.

    Thank you!





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  • -auntie- said:
    Be careful around the concept of an aide. 

    This has been brought to my attention by both the Child Find representative and the day care director (she used to be a SpEd teacher for 25 years). 

    While they can be useful in certain situations, they come with risks that have to be considered. Some random opinions-

    1. I always want my kid working with the most qualified person available. I'd rather a SLP than a para for social skills, a reading specialist for RELA, etc. That makes sense. Honestly, I am concerned about the quality of the services that are available here, even if DS qualifies. Things seem to be moving in right direction, but very slowly...

    2. Where I live paras seem to be one of two molds. In the elementary, they're empty nester moms whose only qualification seems to be having a pulse.

    I had an elementary classroom aide refer to DS's resource room classmates as "those resource kids". Yeah, umm, STFU. !!! That would hurt me to hear and I am not sure I would hold on to my nice mode when I hear it. I would definitely do no aid instead of having an under qualified aid. Again that may be extremely hard to find here. So we will see ...

    At the secondary level, the classroom aides tend to be retired teachers who are more qualified than the one at the head of the class.

    3. Aides can foster dependence. If you do get an aide, make sure they're well trained to avoid this. Their employment is contingent on your child needing their services which can exacerbate this risk. I have not thought of that. Thanks for bringing it to my attention.

    4. They are hugely stigmatizing. Not so much a huge deal in preschool, except that they are a red flag to other parents when you're trying to provide social opportunities for your child. People are wary of inviting a kid who requires a shadow. By about 2nd grade, everyone knows which kid the aide is there for even when the parents have been assured they will present the para as being "for the entire class". Kids are smart. I know. This worries me. We will really have to consider the pros and cons. And only in case if we are assigned a qualified aid.

    5. When a kid has a para, the teacher generally defers to that person rather than take real ownership of your child's educational experience. I would hate my child not to be challenged. I have feeling he can go far educationally.

    DS's 6th grade class was an "Inclusion Class"; the district requires all students to spend at least one year in Inclusion. DS dodged it for 4th and 5th  because he was in the resource group for reading- so they put him their for 6th as a "peer model". Yeah, public school adminstration brilliance at its finest.  The downside was the class was dually taught with a sped and a gen'l ed lead teacher. The mainstream teacher had nothing to do with DS because he was only in her care about 25 minutes a day. He became a guest sin the classroom. The sped teacher was sweet, but clueless around a kid like DS. It was a hard year.

    Thanks Aunty for your thoughtful and comprehensive answers and advice.  



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  • DS is similar in that most people are surprised he is on the spectrum at all. I am working backwards since I got the ed dx first. I still don't have a med dx. The request for a eval through an IEP meeting took three months. And from what I have heard, our school board will not immediately provide services with a med dx - they do their own evals. (I don't know if there is an exception for a more severely effected child.)

    As frustrating as it is, I'd go through with the school board's eval. A good psych and OT eval will find the issues and offer services. If your insurance will cover it, you can try to get OT through that in the mean time.
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  • DC2London said:
    It's going to be tough to get OT through the school system.  Especially at this age, when things like holding a pencil or sitting still and upright in a chair are still developing in all kids.  We'll have to pursue OT privately, for example, bc DS' educational, eating and self-care skills are age appropriate.  He just desperately needs a sensory diet and that's not the school systems' duty to provide.
    Looks like we will be getting private OT, with a referral from the Pedi. The insurance should cover at least part of the cost. 
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  • bliss611 said:
    DS is similar in that most people are surprised he is on the spectrum at all. I am working backwards since I got the ed dx first. I still don't have a med dx. The request for a eval through an IEP meeting took three months. And from what I have heard, our school board will not immediately provide services with a med dx - they do their own evals. (I don't know if there is an exception for a more severely effected child.)

    As frustrating as it is, I'd go through with the school board's eval. A good psych and OT eval will find the issues and offer services. If your insurance will cover it, you can try to get OT through that in the mean time.
    Thank you for your opinion. Yes, we are going through the eval... We'll do everything we need to. We can only start the procedure when school starts. That is Aug. 18th. 
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