Help understanding IFSP results & transitions to the school system/IEPs

Re: Help understanding IFSP results & transitions to the school system/IEPs

• kcisthebombdotcom member

  November 2013

  Your little girl sounds a lot like mine--really struggling with social skills, cognition and motor planning alongside higher level skills like reading. You don't really need to be too worried about the transition. Ei will handle all the legwork. I think the most important thing you can do is get in with the developmental pedi, talk about evaluating for autism, and having them give their recommendations as to what kinds of therapy he/she feels would be best moving forward. Have the doctor write a letter and bring it to your meeting. Here pretty much the school district bows down to whatever the developmental pedi recommends--I know this varies greatly by area. Another thing to do is to look at what services you have available locally. Here we have parent consultants that work through ei but can stay with you after. They're great at helping with the iep process, helping you get things like Katie Beckett which may open the door to more services, and anything really that is involved with parenting a special needs child since one of the prerequisites of the job is having lived it yourself.

  

  Report0 Reply
• Loading the player...
• Assembly_Reqd member

  November 2013

  I would ask the school how they deal with younger kids. Even though she would start pre-school at three, it may be possible that she would just repeat a year or they may have a "lower kindie" type setting where kids with early birthdays are channeled until they are age ready for kindie. 

  
  

  Nate's school is a bit different than a typical public because kids start there at 2(school for the deaf), but i can see how this setup could work for IEP 3's. He moved to the three room right when he turned three last december, but he is still in the three room this year until he is age ready for pre-k.

  
  

  He gets a bit of a repeat to master skills needed for PK AND he also gets a chance to be a role model for the younger threes. I wouldn't stop services now because you think you may do something in the future. Plans can change. She may surprise you and be ready w/o red shirting. 

  
  

  Also, children on IEP's are eligible to be in school until they are 21. You may want to consider not wasting a year of eligibility on the front end when your child may need it later to complete her life skills training. Just something to chew on....

  WAY 2 Cool 4 School
  

  
  

  
  

  

  Report0 Reply
• typeset member

  November 2013

  I agree with the others to get the dev pedi appointment sooner rather than later. 
  
  I just went through this transition. I'm a little more ... thorough ... than some, but here's what helped us: 
  
  I don't know which state you're in. Here, there are things which legally have to be part of the IEP discussion with an ASD diagnosis which otherwise don't get considered (https://www.doe.mass.edu/sped/advisories/07_1ta.html). When we signed the consent to evaluate for the school, they had a one-inch space for "parent input." I wrote "see attached" and sent a three-page letter outlining all of my concerns about his development based on the topics in that link: fine motor, gross motor, receptive speech, expressive speech, social skills and pragmatics, sensory issues, etc. I used excerpts from dev pedi and provider reports. To a woman, the evaluation team said it was extremely helpful. 
  
  Request in writing when you consent to evaluate that they see her in more than one setting. If she attends a daycare, an EI playgroup, or a nursery program, have them look at her there as well as 1:1. We had the autism education specialist (a BCBA), the OT, and the SLP see him in multiple settings. Helped immensely. 
  
  The Wrightslaw book was very helpful. They have great information on their site, too. 
  
  You don't have to just lean on EI to shuffle paperwork for you. You know your child better than anyone and you're a full member of the IEP team. 
  
  
  

  
  

  11/10/10 The Kid

  Report0 Reply
• typeset member

  November 2013

  Hugs to you, too, 'cause none of this is easy. 

  
  

  11/10/10 The Kid

  Report1 Reply
• mightmom13 member

  November 2013

  -auntie- said:

  mightmom13 said:

  DD had her annual IFSP assessment a couple weeks ago and I just got the report on Friday; I set aside time to read it instead of just tearing it open when I got it - knowing what I know now about everything compared to being a complete newbie last year.

  Fine motor seems to be a non-issue (where services are concerned anyways) on scoring, however, she needs work on a lot of things - maybe they grouped that stuff into adaptive. Also fine motor is at better SD than last year at above cut off. Gross motor has improved but is still -1SD with having been discharged from PT and her SMO's and now started AFO's.

  All other categories - Cognitive, Social Communication, Social, and Adaptive are all as I call it "worse" all at -2SD after a year of SLP/feeding, 9 months PT, 6 months of OT, and B-DT just 3 weeks in. What is more concerning to me (as I know DD didn't show off her cognitive per not knowing the evaluators) is that her Social score has only improved from 3 to 5 and her Adaptive score is exactly the same at 2 one year later and with therapy - and all therapists pretty much know her well, all work for the same company, almost all communicate with each other on her progress more than what is required.

  I'm a little confused are you reporting age normed percentiles or stanines? Or both?(Stanine=  nine-point scale used for normalized test scores,with 1-3 below average, 4-6 average, and 7-9above average; one of the steps in a nine-point scale of standard scores) 

  Do you know what evaluations were done by name. Some of those domains sound like they could come from a Vineland, but there's a lot of overlap. 
  

  The name of the flow sheet is the AEPS Child Progress Report - for the overall scoring each skill gets either a 0, 1, or 2 and it appears the larger scores I gave are the total in each perspective category and I also gave the standard deviations of which DD is mostly -2SD which is the lowest of the domain goal scores.

  Sometimes "worse" in the context of these sort of assessments is a function of true developmental delay rather than regression. It's likely that she hasn't lost skills, but that her rate of development is slower than that of a typically developing kid so that the older she is, the greater the skills gap between the two points. Because more is expected as she gets older, she could be doing well with therapies and still not close the gap.

  Because of the unique nature of Ds's dx, I am able to see this play out clearly across the domains. DS has Aspergers which gives him a social and emotional delay that is expected to be about 1/3 his chronological age without a delay in cognition, fine motor, adaptive skills, speech or gross motor. High school was really hard because I was basically sending a clueless kid with the social and emotional wherewithal of a 10 year old into the sophisticated snake pit that is a large high achieving suburban school. DS didn't lose skills, the bar moved and the older he got, the greater the differences between him and his peers.

  The gap is what I am seeing as the difference or change between the two and what is heightening my awareness of where she really is as far as her true delays and/or possible SPD being more than just SPD, looking more like spectrum as she gets older and older as well as in comparison to her peers.

  I am knowing that developmental pedi second opinion (as original doc is no longer here) will be suggested eventually and she is only progressing with her counting and letters (started to spell/say the letters out while reading in proper order, counts to 20 - could go higher) and progressing in her obsession with them. She has developed more echolic (sp?) phrases, songs, book "reading" and cannot seem to get her motor planning in order, asking over and over what is next or today in her own way, anxiety and OCD seem to be hot topics - and when she does socialize she uses a lot of modeling from books, shows, or school reprimands (i.e. "be nice" and only imitating social play via me or other adults then turning it into her own over and over routine).

  In considering cognition, it's import to remember that it consists of a range of specific skills- not just IQ smarts, but memory, problem solving and abstract reasoning. So she could have real gifts in terms of memory or pattern recognition, but have her overall score pulled down by abstract reasoning.

  I almost want to laugh at the term abstract when it comes to DD as, well - it does not really exist in her world. I live on sarcasm and all is lost in our house, my attempt at sock puppets during laundry folding was a short lived "hello blue sock." Memory and pattern recognition are fantastic in terms of mastered arts in her world.

  Her anxiety must be tough. It's the one feature of DS's complex presentation I would happily trade for typical. A revisit with a dev pedi makes sense since she was looked at so very young the first time. A lot of the behavior you describe seem on the ASD-OCD continuum. Maybe you can get better information and a plan moving forward. IME, dealing with the anxiety made DS available to the services offered him and helped him master a lot of what was offered.

  Yes, please trade the anxiety, it is the worst. I am hoping a better plan for moving forward but this is a really tough spot without further professional investigation. Right now she just itches a lot due to her histamine release response to it and gets sweaty/hot during times of sitting still or therapy.

  One quirk you mention, the way in which she "socializes" with peers stood out to me. Acting the "little adult". DS did this and it is a red flag for ASD. As a little kid, he didn't "get" that the socially constructed hierarchy that gives adults more perks and responsibilities. He, like a lot of kids with AS specifically, assumed the role of adult. Not for nothing did Hans Asperger refer to these boys as his "little professors". With DS is was more about being respected as an adult and not having much in common with kids. But some kids I know got into real social quick sand with a tendency to act as the rule police. 

  I think this is what we are dealing with in her giant search for control which goes way beyond toddler "I do's" and well into trying to send mommy to her room, assigning clean up, playing go-to-work-be-right-back on repeat, and wanting to be everywhere I am instead of.....anything typical of her age. She is trying to police me, which is the problem, and knowingly using her high functioning/sensory needs/wants to do so.

  Per the above results, some therapists' input, and my own observation - it looks very much like she will be aging out in 6 months rather than gradating. I have her IFSP meeting Tuesday and so far even though I have asked, the case worker has not provided any input as far as the school system transition goes - only just does the paperwork and has no idea of DD other than the report. I am assuming as everything has to be done before it seems like it that she will have an evaluation with the school system before her 3rd birthday in July?

  We didn't have a dx going into school, so I haven't lived this. People I know who have report that most places start the transition about 3 months out. If you are planning to seek a second dev pedi opinion, it might be useful to have that done prior so that you aren't relying solely on the input of the school district. 

  Good suggestion as I was not aware, deductible #1 of 2014 foreseen.

  I also feel that I will have to advocate more on her behalf as well, as 1) a July birthday is the icing as I was going to hold back a year on pre-school per that, even more that her needs have appeared more and more but you have to enroll in pre-school by 3 years old in order to be eligible for services 

  Why would you hold her out of preschool? I can appreciate redshirting for kindie- hell I did redshirt for kindie, but not preschool. In some districts, services are offered in a preschool or day care setting, other offer services by appointment at the local school. A "classroom" setting is generally preferable because it offer her peers with whom she could practice emerging social skills.

  When praying for a world of graduating vs aging out - I figured she would be less scarred socially by starting pre-school late and then having class consistency and friends. I see now that our world will be a bit different. I now also see via her daycare and the lack of structure there that a classroom setting may be helpful.

  and 2) I feel her therapists through EI have helped me so much in the processes of everything and from what I have read on here - well I would be lying if I didn't say it scared me a bit, not that actual school stories now-a-days aren't scary enough.

  Schools are all over the place in terms of what is offered and how responsive they are to the needs of kids with IEPs. Parents are all over the place in terms of how reasonable they are in their expectations. Most of what you read on forums is pissing and moaning about schools- sometimes justified and sometimes not. The parents whose kids are being well served tend to just get on with their lives- they turn up if they have a concern or something rocks their world- but otherwise many here are dealing with emerging issues rather than a a long established IEP that is effective.

  The other thing that happens on forums such as this one, is that a mom who lives in a decent district and whose child is getting the sorts of services that are working well might feel a little uncomfortable sharing lest it seem as if she is bragging about being a better advocate-mom. So you don't hear as much from the positive side.

  I get what you are saying - I hold back on some sharing of vents due to this, so I can see the other side as well.

  Any guidance to even websites would be appreciated. I know what school would evaluate her and that it is a 2 day eval but that is all. I also know I have the option of "taking a year off" but with increased behaviors and cognitive I feel that would be a bad idea and I can't afford private therapy. TIA.

  I can't predict what dx your LO will end up with, but I do know that untreated anxiety is insidious and will ramp up if you take a year off. Anxiety is my kryptonite- I can deal with most anything but the soul suck that anxiety is.

  I may add addressing anxiety (though I know the developmental professionals need involved here) to her IFSP. And there is no question that we are about to enter the system, the SLP and I had matching cringe faces when she mentioned taking a year off - we will not be taking any time off from this.....challenge.

  In terms of quitting therapy/interventions, DS's psych compares raising such children to the myth of Sisyphus- if you aren't actively pushing that boulder up the hill, it will roll back down and right over you.

   In terms of understanding the IEP process- this book is my favorite-

  https://www.amazon.com/gp/product/1892320096/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=1892320096&linkCode=as2&tag=om057-20
  

  Thanks for the link. Will be seeing if the library has a copy until one can be worked into the budget - plus library loans seem to give me a timeline motivation :P

  
  

  
  

  Report0 Reply
• mightmom13 member

  November 2013

  KC_13 said:

  Your little girl sounds a lot like mine--really struggling with social skills, cognition and motor planning alongside higher level skills like reading. You don't really need to be too worried about the transition. Ei will handle all the legwork. I think the most important thing you can do is get in with the developmental pedi, talk about evaluating for autism, and having them give their recommendations as to what kinds of therapy he/she feels would be best moving forward. Have the doctor write a letter and bring it to your meeting. Here pretty much the school district bows down to whatever the developmental pedi recommends--I know this varies greatly by area. Another thing to do is to look at what services you have available locally. Here we have parent consultants that work through ei but can stay with you after. They're great at helping with the iep process, helping you get things like Katie Beckett which may open the door to more services, and anything really that is involved with parenting a special needs child since one of the prerequisites of the job is having lived it yourself.

  
  Thank you - it does sound like the developmental pedi is the true next step in all of this. And yes, from a lot of your posts our DD's sound similar and I have been lurking on them for quite the recent while now. It helps me feel not so isolated in the "girl world" of all this. I will have to ask about parent consultants - we are in Indiana. I was supposed to be given a welcome binder last year but never was - the case worker said she would bring one, but I will shoot an email to remind her. Forgive the ignorance, but is Katie Beckett national because my SLP (who has a lot of ASD kids) seemed to not be familiar?

  Report1 Reply
• mightmom13 member

  November 2013

  Assembly_Reqd said:

  I would ask the school how they deal with younger kids. Even though she would start pre-school at three, it may be possible that she would just repeat a year or they may have a "lower kindie" type setting where kids with early birthdays are channeled until they are age ready for kindie. 

   

  I will have to look into the school more of where she would be evaluated and go in my district.
  

  He gets a bit of a repeat to master skills needed for PK AND he also gets a chance to be a role model for the younger threes. I wouldn't stop services now because you think you may do something in the future. Plans can change. She may surprise you and be ready w/o red shirting. 

   

  A new way to look at it and like I told Auntie - when the option of taking a year off came up my gut wrenched into a "that sounds like a horrible idea" mode. And she may surprise me, who knows in all of this. I guess I was surprised by her true self coming out more as she got older instead of this is just SPD here. Obviously this is a lot more than I thought even 6 months ago. For better or worse, our SLP seems to be always right when she says - "just tell DD she can't do something and she will do it" - goes both ways unfortunately.
  

   

  
  

  Report0 Reply
• mightmom13 member

  November 2013

  typeset said:

  I agree with the others to get the dev pedi appointment sooner rather than later. 
  

  Besides "DD safe" Thanksgiving sides, this looks like next weeks' focus as mentioned above - I just am frustrated that I know she knows people want her to do things like "feed the baby" - she is so high functioning that though she will not do it on her own - she knows what people want in those situations - just like when I make the car go "vroom vroom." Though she did scare the evaluator when she spent 30 min on the colored animals in the colored buckets, dump, start over, fill, repeat - the lady was scared to take them back for fear DD was "The Orphan" or something.

  
  I just went through this transition. I'm a little more ... thorough ... than some, but here's what helped us: 
  
  I don't know which state you're in. Here, there are things which legally have to be part of the IEP discussion with an ASD diagnosis which otherwise don't get considered (https://www.doe.mass.edu/sped/advisories/07_1ta.html). When we signed the consent to evaluate for the school, they had a one-inch space for "parent input." I wrote "see attached" and sent a three-page letter outlining all of my concerns about his development based on the topics in that link: fine motor, gross motor, receptive speech, expressive speech, social skills and pragmatics, sensory issues, etc. I used excerpts from dev pedi and provider reports. To a woman, the evaluation team said it was extremely helpful. 
  
  Request in writing when you consent to evaluate that they see her in more than one setting. If she attends a daycare, an EI playgroup, or a nursery program, have them look at her there as well as 1:1. We had the autism education specialist (a BCBA), the OT, and the SLP see him in multiple settings. Helped immensely. 
  
  The Wrightslaw book was very helpful. They have great information on their site, too. 

   

  Thank you so much for the above info - we are in Indiana so I am hoping to find some state specific links. If I don't get much from the case worker, I will ask our SLP or our EI therapists' office since they all work at the same one, and the school which luckily is right down the road.  
  
  You don't have to just lean on EI to shuffle paperwork for you. You know your child better than anyone and you're a full member of the IEP team. 
  
  
  

  
  

  Report0 Reply
• mightmom13 member

  November 2013

  typeset said:

  Hugs to you, too, 'cause none of this is easy. 

  Thanks for this too - it's not easy; we passed a Girl Scouts table and though I wish back in the day it was more like Boy Scouts as far as skill sets, it was tough because it felt like that would never be our place. Now just pile on paperwork, extra meetings, learning what real advocacy really is - and well - yes, not easy but accepting more each day - even if others' do not.
  

  Report0 Reply
• kcisthebombdotcom member

  November 2013 edited November 2013

  mightmom13 said:

  KC_13 said:

  Your little girl sounds a lot like mine--really struggling with social skills, cognition and motor planning alongside higher level skills like reading. You don't really need to be too worried about the transition. Ei will handle all the legwork. I think the most important thing you can do is get in with the developmental pedi, talk about evaluating for autism, and having them give their recommendations as to what kinds of therapy he/she feels would be best moving forward. Have the doctor write a letter and bring it to your meeting. Here pretty much the school district bows down to whatever the developmental pedi recommends--I know this varies greatly by area. Another thing to do is to look at what services you have available locally. Here we have parent consultants that work through ei but can stay with you after. They're great at helping with the iep process, helping you get things like Katie Beckett which may open the door to more services, and anything really that is involved with parenting a special needs child since one of the prerequisites of the job is having lived it yourself.

  
  Thank you - it does sound like the developmental pedi is the true next step in all of this. And yes, from a lot of your posts our DD's sound similar and I have been lurking on them for quite the recent while now. It helps me feel not so isolated in the "girl world" of all this. I will have to ask about parent consultants - we are in Indiana. I was supposed to be given a welcome binder last year but never was - the case worker said she would bring one, but I will shoot an email to remind her. Forgive the ignorance, but is Katie Beckett national because my SLP (who has a lot of ASD kids) seemed to not be familiar?

  
  Yep, Katie Beckett is national. I'm not too surprised your slp isn't familiar. I would ask your service coordinator. What state are you in?

  

  Report0 Reply