Testing Results are in / IEP meeting was confusing

[fourcatmom]

So I had dd's initial IEP meeting yesterday with the school district (we homeschool though a charter) and received the results from her academic testing, her neuropsych eval, and PT and OT evaluations as well. When they started the meeting they introduced a new woman who I did not meet at the first meeting and she stated she was part of the 504 plan so right away I knew they were going to put her into a 504 and not an IEP.

 

I don't have the Neuropsych report in front of me so I am just going off memory but the major issue was in executive functioning (not a huge surprise given the TBI). I also remember him saying she had sensory integration but I thought he added more about that and can't recall what it was. Most of the difficultly she had was in anything that had to with tracking, scanning, memory or anything visual. And of course she was labeled at-risk in mental health but that wasn't a surprise either.

 

Academic testing came back pretty much average. There is quite a bit of range for average but she had a few pretty low scores too. Numerical operations she tested below average or at a 4th grade level. In reading comprehension she actually testing at a 2nd grade level.

 

PT she just testing below average in strength (not a big surprise the amount of brain rest she has been on) and also a below average in bilateral coordination.

 

OT was more interesting (but she still did not get services since we homeschool I guess she can adequately access her environment). She tested well below average in fine motor precision, below average in both fine motor integration and upper limb coordination. She tested poor in visual motor search and below average in general visual perception and visual motor integration. She was also not able to demonstrate convergence with both eyes.

 

Not sure what all that means yet, I am still reading all the reports.

 

So they told me despite some low scores that she didn't qualify for an IEP. I signed the paper thinking maybe a 504 was okay since she is at home with school anyway. I was happy her scores were good but still confused. Everyone left except the 504 teacher. As we were talking I started asking her questions about how this was going to really support her as she is just starting school and not even able to do full time yet. I had a lot of questions that she couldn't answer. She went and got the Admin that sat in on the meeting and he comes back into the room, closes the door and sits next to me. Totally confused at this point. He says, "so you have more questions." Yes, not sure what this all means for her day to day and how the school is going to look at her work and what they will be expecting now that she does not qualify. He says he was really uncomfortable in the meeting and he should have spoken up then but he says that she does qualify and that she needs the services that the team could provide. He says he is going to call another meeting and bring everyone back and they will move her from the 504 that was just written into an IEP. So, I go back on Thursday for another meeting supposedly to put her on an IEP this time.

 

I welcome any advice you can offer because obviously I should have spoken up before but you feel pretty overwhelmed with info and it takes time to process it all.

[prairiewindmomma]

Get a copy of Wrightslaw from Emotion to Advocacy pronto. Like, overnight from amazon pronto.  There is a huge difference between a 504 and a IEP....and the paperwork you are signing are legal contracts of sorts. Your signatures matter, a lot.  I'll try to chime in later when life is quieter here at home and I can think....

[Lecka]

But you can ask for a new IEP meeting or for a change in goals or to add goals, at any time, too.  So I think don't stress too much.

 

I think maybe they don't know your daughter and don't understand her needs.  They could need more information.  Or, they need to know you expect more (and are not just wanting some minimal thing that they might think is all you want for some reason).

 

Do you know *anybody* who can come to the next meeting with you?  It can be SO helpful.  For moral support, or help in remembering what was said.  You can also *take notes* and look at your notes and ask for clarification if you see your notes don't make sense.  That is a good strategy I think.

 

You have had your first meeting -- they are kind-of a shock, it can all wash over you.

 

Next time you will be more prepared.  

 

Good luck.  

 

Also, totally agree with Prairiewindmma.  Sounds like you want to make sure you are documenting and setting appropriate goals.  

 

You can do it!!!!!!  Just not giving up counts for so much.  Just keep taking the next steps.  

[Lecka]

Separately -- I think it sounds like she needs OT or something.  Those scores sound concerning to me.  I don't know if you have any other information about those areas wrt the tbi.  But they sound concerning.

 

The reason you are not getting OT, first and foremost,is you are getting a 504 and you do not get OT services with a 504.

 

If you qualify for an IEP, then that can put OT as a service on the table.  I don't know the ins and outs.

 

But yeah, with a 504, of course you are not going to get services of any kind.  That is what a 504 is.  

 

I would honestly call the uncomfortable man (vague on who he is) and ask him what you need to qualify her for OT.  He sounds like he is an advocate for your daughter.

 

Here is how it works, though:  It can count different for a parent to ask for something that a teacher.  Sometimes it is better for you to keep your mouth shut and have the teacher or therapist bring something up.  Sometimes it is better for you to bring something up instead of the teacher or therapist.  You can honestly just say "shall I bring this up, or would you like to?" and follow their lead, imo.  But there are things where it will come across better one way or the other.  Having an advocate is very good.  I mean -- without this guy you might just be left hanging now.  Try to see if you can e-mail or speak with him, and in the nicest way, ask for advice or ask "how can I best bring up this issue?"  or "how can this issue best be presented in the meeting?"  

[Lecka]

I agree with the book recommendation, too.  It is not the only book explaining IEPs, but it is great for giving advice.  Really, really great.  

[fourcatmom]

I guess I am confused more on how they differ in terms of homeschooling? I can already create a flexible schedule and things like that but if she has a 504 I think she would be expected to turn in normal 8th grade coursework in an appropriate manner to our CT (credential teacher) when we meet monthly. At this time she is only doing Animal Husbandry, LA and PE. I am not sure a 504 plan can accommodate that? Does it come down to the services they would provide, and pay for? She is going to get clinical PT. The only thing I think she needs it either OT or Vision therapy.

 

I think they have a good feel for who she is, they all said they had to adjust their schedules to accommodate her, they all had to extend testing beyond their normal expectations. They all had to dim the lights. They all saw her fatigued, with headaches, and hurt and sore eyes. But, i am not sure they know how to handle the situation. They keep pushing for a home hospital program but I don't want it. She is getting better...I won't go back to that now.

[fourcatmom]

Separately -- I think it sounds like she needs OT or something.  Those scores sound concerning to me.  I don't know if you have any other information about those areas wrt the tbi.  But they sound concerning.

 

The reason you are not getting OT, first and foremost,is you are getting a 504 and you do not get OT services with a 504.

 

Okay, I see that now. Thank you. I do agree she needs OT. They said she doesn't need it to be successful at home.

 

If you qualify for an IEP, then that can put OT as a service on the table.  I don't know the ins and outs.

 

But yeah, with a 504, of course you are not going to get services of any kind.  That is what a 504 is.  

 

I would honestly call the uncomfortable man (vague on who he is) and ask him what you need to qualify her for OT.  He sounds like he is an advocate for your daughter.

 

He was an admin for the school. Never met him before but I did get his business card. Why he didn't speak up in the meeting if he felt they were not making good decision is beyond me but I guess I needed to start it. He does seem to be on my side so that is great. He got the meeting rescheduled within three days.

 

Here is how it works, though:  It can count different for a parent to ask for something that a teacher.  Sometimes it is better for you to keep your mouth shut and have the teacher or therapist bring something up.  Sometimes it is better for you to bring something up instead of the teacher or therapist.  You can honestly just say "shall I bring this up, or would you like to?" and follow their lead, imo.  But there are things where it will come across better one way or the other.  Having an advocate is very good.  I mean -- without this guy you might just be left hanging now.  Try to see if you can e-mail or speak with him, and in the nicest way, ask for advice or ask "how can I best bring up this issue?"  or "how can this issue best be presented in the meeting?"  

 

I will email him. Thanks for the suggestion.

 

[PeterPan]

Lecka is correct that they often will not give an IEP *just* for OT.  It's not a qualifying condition.  So you qualify under something else and they throw the OT in for bonus.  Your dd has TBI, yes?  There's OHI=Other Health Impairment.  I don't know enough about the law to know, but there's going to be a label it would fit under, surely.  Sounds like they just gave you the shaft.  They probably talked about it ahead of time (which is against the law), and the coordinator or whoever was running the show said this is how it's going down, get in line.  So that's what that guy did.  Then he got with you and back pedaled, which was very nice.  

 

You're doing the right thing to fight, but you're going to need to get more info.  Find out what her disabilities SHOULD be categorized under according to the law, and fight for that.  As far as the OT, they don't look at category names.  They look at standard deviations. So you ask for the score pages, and it should have raw score, percentiles, and standard score.  Then it should tell you for that test what 1SD (standard deviation) is.  In most districts if you are 1.5-2SD below the mean (the average, usually 100), you qualify for services.  So in order to advocate for her, you need to look at those scores, google the test, find out what the mean and standard deviations were (typically 10 or 15), then see where she falls.  

[rdj2027]

My son has a 504 for homeschooling.  He does not need services but accommodations.  Because of the 504 he gets double time on tests, he can type, have a scribe, adaptive soft and hardware or he must be handed a transcript of the class.  He also has a reduced workload (this is where your number of subjects, hours or assignments come in).

The other difference between the IEP and a 504 is that once the child graduates high school, the IEP is done.  My son's 504 falls under the ADA and will transfer to college (provided the evaluations will state a necessity for accommodations which they will, his issues are not going to improve) and potentially into the work place.

Some of the issues I can accommodate at home but the issue were testing and classes outside of home (public high school community college, AP classes...)

[fourcatmom]

She qualifies under TBI. In the list of disabilities that I looked up online that qualify, TBI is it's own category. That is what they listed on the 504. I have the OT report, I will look at it again and see if I can figure out the numbers that you mentioned.

 

The thing that upset me about the 504 too is that the person writing it had never even met my dd, and did not participate in any testing. All the other people there really understood her needs. The 504 person wanted to put her in classes. It's like she wasn't even listening to what the problems were. No with the noise and lighting alone she would not do well in a class right now. And I barely get 20 minutes out of her at a time at home.

[prairiewindmomma]

My best advice, I think, is to assume that the ONLY support/rights you have are what's in the 504 or IEP.  IOW, pretend that everyone does not know your daughter, does not want to help her, and is trying to make her act like a typical student.  

 

The number of breaks she needs, the non-strict hours, all of those things are REALLY BIG DEALS....even when you're homeschooling through a charter.  Imagine if she was asked to do a test where she had to match items from the left column to the right column.  No amount of extra time makes that "fair" to her. She simply doesn't have the skill to do that without completely exhausting her brain. (at least that has been true for my two kids with scanning and tracking).  Imagine doing multi-columnar math and proofs.  I think you're still thinking about life in terms of where she is RIGHT NOW (only taking a few light not really academic classes), but reality is that at some point the big picture of what does this kid need to do to graduate is going to come up.  And you don't know that everything is going to "come back". Because it may not. Because TBIs suck and as plastic as we want brains to be, the reality is that damage is damage.  IEPs are adaptable and changeable, but the problem is that your initial IEP meeting is not addressing how bad things really are right now.  You are framing the conversation for the future now.  

 

TBI is a separate category, as mentioned above. It's in this hazy land of OHI, and there are a huge number of advocacy websites up on academic IEPs for TBIs just because people in the TBI category tend to have their issues minimized because services are expensive and budgets are limited and adapting and paperwork is a huge hassle.

 

Have you ever looked at something like this kind of checklist? http://biaindiana.org/wp-content/uploads/2014/01/in-module_v.pdf

 

http://media.cbirt.org/uploads/medialibrary/2010/09/Guided_IEP_for_Students_with_TBI_16.pdf

[fourcatmom]

One of the tests that she did for OT was called the DTVP-A test and I found some information about the test online but mostly why it is given which was interesting:

The DTVP-A is a battery of six subtests that measure different but interrelated visual-perceptual and visual-motor abilities. It is especially useful in the evaluation of the neuropsychological integrity of TBI and stroke patients where right-hemisphere function may be an issue.

 

For example in the visual motor search sub-test she scored a 4. (1-3 is very poor and 4-5 is poor). Her percentile rank is 2% for this area. I can't find any other info online about the scoring but to me this should be enough to warrant OT in my opinion.

[fourcatmom]

My best advice, I think, is to assume that the ONLY support/rights you have are what's in the 504 or IEP.  IOW, pretend that everyone does not know your daughter, does not want to help her, and is trying to make her act like a typical student.  

 

The number of breaks she needs, the non-strict hours, all of those things are REALLY BIG DEALS....even when you're homeschooling through a charter.  Imagine if she was asked to do a test where she had to match items from the left column to the right column.  No amount of extra time makes that "fair" to her. She simply doesn't have the skill to do that without completely exhausting her brain. (at least that has been true for my two kids with scanning and tracking).  Imagine doing multi-columnar math and proofs.  I think you're still thinking about life in terms of where she is RIGHT NOW (only taking a few light not really academic classes), but reality is that at some point the big picture of what does this kid need to do to graduate is going to come up.  And you don't know that everything is going to "come back". Because it may not. Because TBIs suck and as plastic as we want brains to be, the reality is that damage is damage.  IEPs are adaptable and changeable, but the problem is that your initial IEP meeting is not addressing how bad things really are right now.  You are framing the conversation for the future now.  

 

TBI is a separate category, as mentioned above. It's in this hazy land of OHI, and there are a huge number of advocacy websites up on academic IEPs for TBIs just because people in the TBI category tend to have their issues minimized because services are expensive and budgets are limited and adapting and paperwork is a huge hassle.

 

Have you ever looked at something like this kind of checklist? http://biaindiana.org/wp-content/uploads/2014/01/in-module_v.pdf

 

http://media.cbirt.org/uploads/medialibrary/2010/09/Guided_IEP_for_Students_with_TBI_16.pdf

 

Your right. I am often thinking just about how we can get through this day, this week without looking long-term. Thanks you for your post.

 

[Lecka]

This is okay!  You can do it!  You can always add to an IEP.  You have got the repeat meeting.

 

Sometimes people make mistakes and they can do better after some more explanation, or polite disagreement.  I hope for this to be the case!  I think it can still go easy-ish as you move forward.

 

Remember not to shoot your admin guy in the foot, though.  You can say things without saying "so-and-so told me blah blah." You can just say "blah blah" and then maybe he supports your statement of "blah blah."  That may be really fine.  

 

Or maybe he does "I realized blah blah" and is just like "sorry I didn't realize these additional factors before."  That is a normal thing to happen for him to be able to play off, that doesn't reflect poorly on anybody.  It is just a process that can be complicated.  

 

/rose colored glasses

 

I agree with prairie wind momma, too.  She needs to have her needs truly met through this documentation process.  But still -- Positive Polly here :)

[prairiewindmomma]

I've had 3 kids with 504s and IEPs now...hurray!  :closedeyes:

 

IMO, some people, even on the SPED end of things really don't get it until you spell it out.  One of the helpful things I did in trying to get advocacy for my kid from within the team was to sit down, open up a textbook, and explain why specific tasks were hard and to ask how we could make those "appropriate" for my child.   When we all sat down, textbooks in hand, and really talked about things and ALL of the supports I was providing at home to help my child perform, THEN everyone got the big picture.

 

You need to paint the picture of how bad things really are (even as it breaks your momma heart) so that people can help you and your child.  Does that make sense? It's not trying to get pity or an easy ticket out--it's getting everyone to the table so that they can all bring their strengths to the team.  People want you and your kids to succeed (says positive mama).  

 

We went through an administrative shift at our charter while we were there....people can leave or district pressures can change, that's why it's so important that everything is spelled out.  (Yes there's a story there.)

[fourcatmom]

Now I really feel like I am going to have to get tough. I emailed the office this morning asking for a completed copy of the Neuropsych report. They didn't give any out because he had to revise something in it. I want to review it before tomorrow's meeting.

 

The psychologist emailed me back and asked if I could come in at 2 and he could give me a copy. He also stated he wanted to go over next steps and options before tomorrow's meeting. I said no, please just email me the report.

 

 

[fourcatmom]

So I have sitting her reading things online, talking to my dh, and processing some of my thoughts. I was definitely not prepared to fight on Monday and it took me some time to figure out why. I have 0 problems fighting at the doctor. If I don't know what she needs I research it, talk to people, ask questions and then push ahead. I rarely feel defeated and if I don't get what I want I change things up so that I can get it someplace else. I guess the past three years I have spent fighting with my lung disease has helped me in that process. For some reason I am just more confident on the medical side of things. It's kind of funny that I feel that way since I worked in special education prior to getting sick.

 

I worked at a  special education co-op based preschool in our local school district. I implemented IEP's all the time. Maybe our school was exceptional but for the most part I didn't see parents having to fight for services, except maybe VT. It just seemed like the school cared about the kids and the kids got what they needed. I am sure there was a lot I missed out on that the families went through and probably only saw this through my own rose colored glasses but I know as a "team" we did really care about the kids. I went it this meeting thinking they cared about mine and I guess that's where I got lost. I think because she is homeschooled I think in terms of adjusting my expectations, environment etc to meet her needs because even with an injury or a disability we have the flexibility to do that. I can school a night kid in the evening, it doesn't have to be in the morning. I keep thinking in terms like that but your right I am not looking at the big picture and I assume that since she is at home that I can fix everything and it's only a matter of time before things go back to what they were. I have had some tears today working through this but I accept that it might not return to what it was and I have to look at what is on the table now and push ahead based on those needs. I think if she was in a school setting I would no problem fighting for what she needs (breaks, lighting, test taking, etc) but it gets clouded in my head when I think of school at home. I have no idea what curriculum to choose at this point to best meet her needs. I have no clue at this point what she should be doing. Where do I push, not push, adjust? I am frustrated trying to implement what little is being asked of her and I document everything. I really don't know what is reasonable to ask of her. i question myself all the time. Am I pushing too hard or not pushing hard enough. Is she just being a 13 year old or is this really hard for her? I don't want her to think of this as a disability or an excuse. I am really still trying to figure this whole thing out.

 

I am also not used to thinking of school as providing services, for us. I think medically. If she needs PT I go ask the doctor. I don't think to ask the school. I have to change the way I think. She should have been put on a home hospital program a year ago. Again, I just adjusted my expectations but the school also let things drop. I want her to be successful in high school and beyond. I want her to feel and be successful in life.

 

I always thought this was temporary. :sad:

 

I have been reading over the OT report specifically since I think that is what I feel would be most beneficial (in terms of services) to her. She is already starting PT though our clinic so I don't need to worry about that. I am sending a copy to her doctor today and he is going to review it. I asked him to write a letter of recommendation if he feels that OT is warranted. I think they would have a harder time fighting the advice of a doctor. We will see what he says. In the report it keeps going back to even though her scores are low, she can access her educational environment thus doesn't need OT. I found something useful online that talks about L.I.C.E and in working with students with TBI. It's not just about the environment, that's not the whole picture. L.I.C.E is the Learner, the Instruction, the Curriculum and the Environment and looking at just one aspect regarding qualifications for services does not take into account the students whole needs. And, I have been doing the same thing thinking that I can just make accommodations to the environment and eventually things will get better. I need to not only look at what I teach but how I will teach it, how she will best learn it and I need to look at her. I need to see her strengths and weakness now and not what they were before. I think if you take into account her (the learner), the instruction, the curriculum and the environment then OT is warranted. She has to be able to do the work and these visual problems will affect that.

 

Am I on the right track now?

[Pen]

When my ds had IEP services through local school it was quite grueling in that he had to be there daily. Even if lights had been dimmed for his room he would have had to get there along noisy, brightly lit halls, and to have coped with a lot that would likely be hard for someone with TBI problems. Where you are would there be IEP services actually at your home?

[Pen]

He also stated he wanted to go over next steps and options before tomorrow's meeting. 

 

 

I think knowing next steps and options he can think of so you can sleep on them might be helpful.

[Pen]

. She should have been put on a home hospital program a year ago. Again, I just adjusted my expectations but the school also let things drop. I want her to be successful in high school and beyond. I want her to feel and be successful in life.

 

I always thought this was temporary. :sad:

 

...I can just make accommodations to the environment and eventually things will get better. I need to not only look at what I teach but how I will teach it, how she will best learn it and I need to look at her. I need to see her strengths and weakness now and not what they were before. 

 

...

Am I on the right track now?

 

 

I have had brain injury. And because of that also met others in support groups and so on who have that.  It is very difficult to deal with.  

 

Maybe it will be temporary.

 

But maybe it will not be. It often gets "better" but never totally "well" again.  Or at least that is so for people I have met--I suppose the ones who get totally "well" do not go to support groups.

 

One has to do the best one can with the hand one has now rather than the hand one had before.

 

Either way, I totally agree with the bold part.

 

Does she still need a home hospital program?

[fourcatmom]

I ended up talking with the school psychiatrist over the phone and it went better then I anticipated. He apologized for the meeting, saying that he heard that I was upset after. I explained it was more being overwhelmed and asking questions about how to proceed that lead to further questions that no one could answer. He said he was kind of on the fence about which program to put her in and he was trying to be hopeful and optimistic, stating that he felt that she did display academic success and had the skill set necessary to succeed. He also commented that he sees so many kids with so much more difficulty that he went with the 504. He also said that he did agree after talking about it more that she could use the additional support that the team could provide, including counseling if she wanted it. I think this could be helpful in giving her tools to work though the frustration and the fatigue at home. She did do better for them then she probably does with me. She definitely knows how to pull the mom card and use it but like I said before I don't want her to use this as an excuse either. I just need to find that balance.

 

So I guess I don't need to be as nervous about the meeting tomorrow and hopefully this will all go smoothly. I am actually glad we talked now. I probably would have gone in defensive tomorrow. Not I am ready to be assertive but not on the defense.

 

Thank you everyone for all your advice in helping me navigate this and all the other support that you offered during this whole process. :grouphug: It really helps to talk it out with others.

[fourcatmom]

The meeting went very well. She has an IEP. She will also get a chrome book laptop from the school and they are going to put some programs on it, like speech to text that will be helpful to her. She will also get some counseling services but she will be able to use Skype on the laptop to do that. Works for me since we seem to be in the car all the time now.

 

They will not push to retain her but she will have an extended school year which I think will be really great. I can't image stopping come next spring and loosing all the ground work so this will be great to have the support year around and that way too she can be on track for high school, which she really wants. Retaining her will not help her confidence and would really be a mistake and I am glad that the team saw it that way too.

 

I feel like I can do this now!  :hurray:  And, I think she is finally feeling like she can do this too.  :hurray:

 

I am not going to stress about the number of hours as well since really doing anything will count at this point. I do need to follow 8th grade subjects though so middle ages for History is not going to be easy.  :glare: Math I think I have covered and science is earth science which she actually is very interested in. I think I will look at some of the planet videos and things like that and go from there. LA I am going to look at the History of the Horse from Beautiful Feet as I think that will qualify as LA. She is strong is grammar and vocabulary so I am not sure if I would have to add something extra for those. I have to look at the program a bit more. History - looking at audio books, maybe SOTW but not really sure they will hold her interest enough for her to pay attention, the same goes for movies.

Anyone have ideas for History?

 

Looking at BF again I am not sure that will work. It clearly is listed as a history course but I was thinking since it involved reading books that maybe it could be LA but it also says 3-6th grade so not sure on that either. I am guessing they would want me trying to do 8th grade level work with her.

Edited November 20, 2015 by fourcatmom

[Pen]

I'm so glad it went well!!!

[prairiewindmomma]

Glad it went well!

 

Can you get her diagnosed with a print disability (the scanning/tracking issues she has) so that she can qualify for Bookshare and she has access to audio textbooks? Most schools just have a login to give her. As homeschoolers it just took some signed paperwork and we qualified kid3 for his own login.

 

Audible also has a fair number of audiotextbooks.

[fourcatmom]

Glad it went well!

 

Can you get her diagnosed with a print disability (the scanning/tracking issues she has) so that she can qualify for Bookshare and she has access to audio textbooks? Most schools just have a login to give her. As homeschoolers it just took some signed paperwork and we qualified kid3 for his own login.

 

Audible also has a fair number of audiotextbooks.

 

I have no idea but they did mention audio books and it is on her IEP as well as a using a calculator but I haven't decided about that yet. I wasn't sure how they were going to do the audiobooks but they mentioned it several times. Maybe the program will be on the laptop? That would be cool.

 

I will look at audible. Thanks!