ADD/Dyslexia Waiting for another assessment, in PS intervention hell

[summerlake]

My almost 9yo DD's main issue is her reading fluency terrible and we have not been able to find out why. She is currently reading at less than 30 words per minute, very haltingly and with many long pauses. She was screened for "processing" last year through school, and it showed that she did have some vision processing disorders. At that point she was still able to function at grade level (2nd grade) though our concerns were rising.

We kind of jumped the gun and put her in 3 months of vision therapy, in office and at home. It did not help, the eye doctor said that her eye tracking is all over the place, worse than a child at kindy level. We've had her in many different styles of tutoring and this year it has become very clear that she is lagging VERY far behind her classmates in reading fluency. Her comprehension is ok, she just can't keep her eyes tracking through a passage. Besides reading she's at grade level and makes B's and some C's, though works very hard to do so.

We had her go through a full assessment with the school psychologist who said she had working memory issues, short term memory issues, processing and automacity issues, it was very vague and the psychologist was not great to work with. We also filled out a number of surveys for ADHD that were sent to DDs physician. The school is very slow moving, we have to go through 2 terms of 8 week interventions that we are just near the end of and there has been no positive change, her fluency has actually gotten worse.

DDs physician has said she is likely ADHD-Inattentive, and the inability to repress an eye movement reflex may be due to that. Unfortunately medication seems to be the best course of action if that is the case. We were referred to an independent psychologist who is scheduling another full assessment including dyslexia, for next week.

I'm so eager for answers, it has been a really stressful year trying to navigate the 504 plans and school policy and advocate for my DD where it seems the school is not being very helpful. Very frustrating to think of all that we have been through for so little progress. To add to the pressure, Florida, where we live has this horrible FCAT testing that is high stakes, if the kid fails that test, she fails the grade. This is on/about April 16. 

I and the school administration have a meeting on/about April 10th to discuss whether they think an IEP is in order, if my DD may be eligible for ESE. At this point, nobody knows WHY her tracking is so bad, any attempts to help her with different curriculum has not helped, and the school has no idea what interventions or accommodations may be appropriate. We have just kind of been throwing things together and hoping something sticks. I don't know what an IEP would even consist of at this point. All of my hopes are with this one last psychologist. 

Does anyone have any advice about meeting with schools about IEP for ADHD/Dyslexia issues? Has anyone been through these psych evaluations before that can let me know if there's anything I should be asking? I'm feeling overwhelmed. 

[Jen Muise]

I hear you mama!  My 9yo doesn't have the visual issues yours does, but struggles with reading in spite of being very bright.  We've been looking for years for some kind of solution, and it has been frustrating from the start and required regular re-evaluation.  Do you have any technology in place to help her learn?  typing and using word Q to read for her helped dd quite a lot.  We got her a little netbook and she uses it when she wants to.  It seems to take the pressure off.  Other things that are on dd's IEP include more time for tests, someone to read questions for her, someone to scribe for her, a quiet low distraction place for her to take her tests and reduced workload.  I have to stay involved to make sure they are doing all this, and some of it is still sketchy as it depends from teacher to teacher how much it gets followed. 

[Emmeline II]

I recommend stepping up to a hospital clinic like this UF Developmental Pediatric Center.

I also recommended reading "Wrightslaw: From Emotions to Advocacy" ASAP; the information from the book can be found on their site as well (Table of Contents). Reading "Wrightslaw: Special Education Law, 2nd Edition," would be a good idea as well). Their store has a couple of book recommendations for IEPs.

Florida Bureau of Exceptional Education and Student Services

Parent Information

You may also want to check into special education advocate; I wouldn't go to that meeting alone even if you don't have a professional with you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Under IDEA/IEP, if your child has a disability that adversely affects educational performance, your child is entitled to an education that is designed to meet the child's unique needs and from which your child receives educational benefit.

A 504 is helping your child get the same education that everyone else is getting--more for a student that needs accommodations to help them learn (like sitting next to the teacher) or for behavior, and that they are not punished for things that they cannot control due to the ADHD (like needing to work standing up or not sit inside a group).

[A IEP or 504 is not an escalation or punishment for the teacher/school. It's more about getting all appropriate parties involved and on the same page. The student, parent/legal guardian, teachers, principals, Pupil Services administrators, support staff (i.e. nurse, counselor, psychologist, language/speech pathologist) as well as the student's physician or therapist may be involved in the placement process including the 504 meeting.]

Eligibility under IDEA for Other Health Impaired Children

Key Differences Between Section 504, the ADA, and the IDEA.

(http://www.wrightslaw.com/info/sec504.summ.rights.htm)

[summerlake]

Quote:

I have to stay involved to make sure they are doing all this, and some of it is still sketchy as it depends from teacher to teacher how much it gets followed. 

This is a big problem for us right now. We're working with a teacher who is either doing the bare minimum or nothing at all. It's almost easier to go through a contact in administration and have our concerns and needs dictated through them. I know a parent like me who is new to this process is probably pretty annoying but I'm so sick of having to advocate for common sense. 

For instance: Early this semester we (parents and school admin) reduced her reading level by more than a whole grade level so that she can read her books more slowly and multiple times, hoping this may increase her fluency. Because she is reading lower level books, she is now accruing a failing grade each week because her average book level is so far below a fixed goal. This fixed goal can not be adjusted I was told by her teacher today, it is the same for all children no matter what as defined by the AR curriculum. This semester she is now failing reading because we lowered her level. It's so unfair, and I'm trying to relax before I call the school again to discuss this.

Quote:

I recommend stepping up to a hospital clinic like this UF Developmental Pediatric Center.

Thank you, there is a good clinic in Miami that would be a bit closer (still two hours away)that I will definitely look into. 

So the meeting on April 10th is an eligibility staffing meeting, so I see that's where we find out whether she's eligible for IEP, does it seem to be consensus that an IEP would be more desirable and that should be something that I push for? Based on the information you have attached it certainly seems like she should be considered eligible.

[Jen Muise]

I would absolutely push for an IEP.  It gives you some credibility, precedence and legally the school must provide for it.  It changes your requests and suggestions from optional to required.  Like I said, your fight is unlikely to end there, you will still have to be pushy, but at least you can go into a meeting and say, How is this requirement being met?  Why don't I see assistive technology in use?  Or whatever, and they have to give you more than a shrug and an excuse.  An IEP can also help avoid silliness like giving failing grades for an intervention, since the modifications and goals of the IEP are reported on as well.  An IEP also may increase funding for your daughter, allowing for time with an LST or other interventions that might not be available to you right now. 

[my3beasties]

Just wanted to offer my sympathies!  We are going through similar things with my 6yo DS, he's dyslexic/ADD and we're wondering if he has bipolar or mild ASD.  The teacher is no help, the school SPED team is dragging their feet on his 504, and we can't get him evaluated & diagnosed with anything else at the child development center until late May, too late to help this school year.  The only good thing is, we should be able to have an IEP in place for next year...but being so stressed & burnt out on school by the end of kindergarten is not a good sign!  So anyway I feel for you & wish you the best of luck with your DD! I'll be watching the thread.

[summerlake]

Well, we did get a formal diagnosis of ADHD-Inattentive and Dyslexia. I'm bummed with the dyslexia diagnosis, it looks like we've got a long road ahead of us with that. I was given a brochure for a great tutor for children with dyslexia, and that seems to be the only intervention available for dyslexia. She recommended we come in 3 hours a week and it looks like it is going to be quite an investment. Does anyone know if there is aid or any kind of financial help for dyslexia tutoring?

The psychologies said that DD's processing is so slow but that she has an outstanding ability to compensate for all of the struggles she has been experiencing, which has enabled her to keep her comprehension at 100%. Poor DD has been working SO hard to keep up in class, she's really been able to persevere through all of this with ton of effort on her part. I really just want it to get easier for her. 

I still have a bunch of questions, one being how do the two issues interact with each other - if we treat the ADHD will it alleviate some of the symptoms of dyslexia by providing more processing power? Should I be pursuing any technical accommodations? I have a follow up appointment with the psych to discuss these types of things.

Short term, I have to notify the school about the diagnosis and get revisions to the 504 plan in place immediately before this f*ing test next month. These will include giving her a bunch of breaks throughout the test, noise cancelling headphones, a highlighter, repeated directions, the opportunity to read aloud, verbal encouragement, large print test; she already has unlimited time and is taken out of the classroom into a small group setting. 

Long term, I have to prepare for the IEP eligibility meeting and see if the school might accommodate a request for placement with a teacher with some kind of training to accommodate dyslexic students.

That's my update! I'll keep it posted.

[Peony]

 I haven't seen any general aid for dyslexia tutoring other then if the person offers sliding scale or discounts. Many don't because they don't have to.  You are right in that it is quite the investment, this is our 3rd year with a therapist doing 4-5 hours a week year around. Let's just say that our monthly bill with her rivals many mortgages. DD1's progression has made it well worth it. DD1 isn't ADHD and dyslexic but my DH is ADHD and severely dyslexic as well. Medication for his ADHD is essential to keep him functioning at all, without it, he just doesn't have the attention span to be able to compensate as well. He can compensate very well and most people do not know he is dyslexic despite being a CEO of a company, but he does have a secretary that can read and write for him! 

[melissa17s]

Hello, my ds is also adhd and dyslexic.  We are not able to medicate for the adhd because he is also epileptic, and we had a rough 1st year with antiepileptic drugs which accentuated his adhd behaviors.  Currently, the aed which he is taking helps with his adhd behaviors, so we hope that it keeps working for him.  We went to a psychologist for a year working on nonmedicated methods for dealing with a couple of behaviors that were issues at school.  In terms of the dyslexia, he did occupational therapy to help him learn how to write, but he really disliked it overall.  He also has an iep with accommodations, such as help writing long passages, extra time on exams,  and reading assistance during exams.  He also meets twice a day with the special ed teacher. She works 30 minutes on reading and 45 minutes on writing.  None of the teachers at his school specifically have a curriculum for dyslexia- it is left to their own discretion.   I talk regularly with them about his progress.  One thing his current teacher is quite confident about is that he reads better to himself than aloud in testing situations.  She said he is able to keep up with classroom reading and answer questions very well, but as soon as they ask him to do passage reading aloud from various assessments, he starts skipping words. He does not like typing and we have not found a good alternative to writing, yet.  

Summerlake, I hope your dd is able to benefit from her iep and that the school is able to help her.  I would see what your school can offer for the iep before starting the tutoring.  They may be able to help get your dd caught up, but then again, it may be a great idea over the summer to have her get specialized help or also if they school does not.  Our psychologist had us read Sally Shaywitz's book Overcoming Dyslexia, and I understand in theory, but have not totally applied it in action.  

[summerlake]

Thank you for all of the input. DD's physician recommended putting her on a low dose of vyvanse to take the ADHD out of the equation to see if it helps. We will give it a try, but I'm not crazy about the idea. If she doesn't feel good we'll take her off of it and maybe see if behavioral therapy will help. 

I did consider the option of getting one of the Barton System or Linda Mood-Bell kits to work with her at home, but I'm really not the best teacher and work full-time so we would be doing all of our tutoring at night. I suppose I can handle the tutoring, we have tried so many other things (vision therapy, sylvan, independent tutoring, allergy testing) that we're close to paying private school tuition rates annually for her anyway. I'm really encouraged to hear that your daughter has seen so much progress Peony! 

We are on spring break now so I haven't been in touch with the school, but I hope they have some resources to offer. Our psychologist is so great, she is helping me write up a list of accommodations and arguments for an IEP. After years of spinning my wheels with the school and various other people I finally feel like I have a team of people who really have DD's best interests in mind. I'm still generally stressed about the FCAT test, but we'll face that when we get to it. 

[Peony]

Originally Posted by summerlake 

Thank you for all of the input. DD's physician recommended putting her on a low dose of vyvanse to take the ADHD out of the equation to see if it helps. We will give it a try, but I'm not crazy about the idea. If she doesn't feel good we'll take her off of it and maybe see if behavioral therapy will help. 

I did consider the option of getting one of the Barton System or Linda Mood-Bell kits to work with her at home, but I'm really not the best teacher and work full-time so we would be doing all of our tutoring at night. I suppose I can handle the tutoring, we have tried so many other things (vision therapy, sylvan, independent tutoring, allergy testing) that we're close to paying private school tuition rates annually for her anyway. I'm really encouraged to hear that your daughter has seen so much progress Peony! 

We are on spring break now so I haven't been in touch with the school, but I hope they have some resources to offer. Our psychologist is so great, she is helping me write up a list of accommodations and arguments for an IEP. After years of spinning my wheels with the school and various other people I finally feel like I have a team of people who really have DD's best interests in mind. I'm still generally stressed about the FCAT test, but we'll face that when we get to it. 

Her progress has been amazing. She went from literally being unable to write her name and only knowing 3 letters of the alphabet to reading at above grade level. The first year of therapy was strictly spent on teaching her the alphabet. Not to say that classwork isn't still difficult for her because it is but it always will be. She will always have to work three times as hard just to marginally keep up. She fails every single test ever given to her, oral or not, BUT considering where she came from, this is WONDERFUL! She originally was so far below grade level, years, that the original testing did not even go down that far, everything was marked with a N/A because she couldn't do anything. We have all the testing and classwork issues figured out, not in a IEP because they don't exist at her school. Her tutor is now starting to work with her how reading a higher level novel with comprehension and then we will be done with tutoring/therapy! I say therapy because her "tutor" is really a certified academic language therapist with many years of working with dyslexic students, she specializes in the severely dyslexic like my DD1. She has done a highly structured program with DD1 over these years, and I truly can not say tell you how we feel blessed to have been able to do this with DD1. I realize it is not an option for many families.