Parents of Dyslexic kids

[UMaineTeach]

Is she going to change ages from now to February? Having her be older will make the score be scaled against older kids who are her age and the IQ is likely to be more stable.

To me, if she just had her IQ tested (<3 years ago) and is receiving services, then February will be fine for a re-eval to start.

She might request an IEP meeting to discuss how the OG is working, what the progress is, and if they would recommend a different intervention. Or just ask the teacher without a meeting. Unless OG is written into the IEP by name, they can change the intervention to work on the same goals without meeting.

[186momx]

I think timing for testing is important at the school level because of developmental phases. My DD didn't get tested until February of 3rd grade for speech even though I questioned it in 2nd grade. I was told it was because the sounds she was missing could still be learned on her own into 3rd grade. Same thing with getting her tested for writing B/D backward and numbers backwards or in the wrong order didn't happened until the end of 4th grade when doing that became an issue instead of developmentally okay. I had to fight hard for that testing because she had good grades, scored well on all the diagnostic testing, and was an active member of the classroom. Trust me it was a shock to get diagnosed with phonological processing disorder at the end of 4th grade and your off the chart reader being told she has phonics skills of a 1st grader. As a 7th grader she still scores great and has great grades but she works her butt off for them. It is always hard to get the ever-changing SPED teachers to understand why she has an IEP.

[joy]

Why is her IEP geared towards speech when her eval suggested dyslexia?

What does “suggested” dyslexia mean? May be possible but no diagnosis?

My daughter was diagnosed at six. She saw a neuropsychologist who did a full educational evaluation. That will look for dyslexia, dyscalculia, dysgraphia, anxiety, ODD, OCD and ADHD among some other things. It will not cover speech (separate specialist/eval) or hearing (separate specialist/eval). I’m not an expert; this is just our experience. My daughter was also observed in class.

There is a list if accommodations that are specific for dyslexia and ADHD. If these are your granddaughter’s challenges, then the sooner she is supported for them, the better. I would not wait.

I would absolutely NOT wait until she is older for a full eval. If she’s struggling, your granddaughter will know she is different. This can lead to anxiety and stress even in very young kids. It can cause true problems at school and with confidence. Tackle the issues now. Don’t make these issues compound.

I have a lot of feelings about being told to wait for a dyslexia diagnosis at 8 or older. I cannot stress this enough but EFF THAT. My daughter had signs at 3/4. I knew.

[joy]

Another thing to consider: ADHD may be keeping her from accessing the material. Supports for ADHD may help her close the gap. Supports can be more time in assignments, sitting in the front, partnering with focused kids, etc. it could also mean meds.

ADHD is a medical diagnosis. The pediatrician can help you here.

[joy]

Your daughter has a right to ask for a full educational evaluation - in writing - from the school district right now. She should prepare to defend why she wants it. The school has a right to say no but she can make a case.

She can also hire an advocate to help her navigate this process with the school.

A school psychologist will not diagnose ADHD or other medical diagnoses. Your pediatrician can lead the ADHD diagnosis. A private psychologist can also do this diagnosis.

Sorry - my daughter has dyslexia, dysgraphia and ADHD so I’ve been there.

[steamboat185]

We paid for a neuropsyc eval this summer for my then 6 year old to and she was diagnosed with dyslexia. We were 99% sure she had dyslexia and wanted to speed up the process. She has been doing private OG tutoring 45 minutes 2x’s a week for about 2.5 months and has moved from below 2% (late preschool early k) of grade level on evaluations to 40% of grade level (testing at early 2nd grade). She still needs a lot of support and is a super slow reader, but it’s gotten better.

I would definitely push for the eval or at least get on a wait list. Edit also if you aren’t seeing growth with OG tutoring maybe see if there is another tutor that they might mesh with better. DD loves her tutor and they get along fabulously.

[steamboat185]

As an aside I work in my kids school and work with the Sped team directly and it’s still been incredibly awful to get DD evaluated. We currently have no formal plan in place. They are excusing her tardy’s for tutoring and have give her accommodations, but they aren’t formally recognized. I’m strongly considering getting an advocate because I’m so frustrated and I’m literally in the building most days. Everyone is so overworked and there are so many kids with severe learning needs they just don’t have the resources to even evaluate the kiddo that “only” has dyslexia, anxiety, and processing issues even when presented with a 19pg report.

[sillygoosegirl]

Schools generally can't diagnose "dyslexia" and for the sake of special education, I keep getting told the child must be 2 years behind. We've insisted on them doing testing now, and I'm hoping it won't bite us in the ass, but I am indeed concerned it might because there isn't a fluency baseline until winter of 1st grade. So right now with a 3rd grader whose fluency is absolutely off the charts terrible, I do think there is some risk that they come back and say her fluency isn't 2 years behind because the fluency expectations for fall 1st graders is "N/A". Which is total bullshit. She's like 1st percentile on fluency... it's a huge problem and she's not just a little bit behind, she's just getting screwed by the fact that this particular skill where she struggles the most isn't benchmarked in kindergarten.

The whole thing is a freaking nightmare. They can diagnose dyslexia in preschool now, with a high degree of accuracy. They know the developmental markers. And yet most providers and seemingly all the schools insist on waiting until kids are terribly far behind and any possible "sensitive window" for acquiring important phonemic skills has closed (unclear if there really is such a sensitive window here, and how much the needle might really be moved acting earlier anyway, but it does seem that the vast majority of kids to achieve in this area do it by 3rd grade, yet it remains nearly impossible to get diagnosed before that).

I think phonological processing disorder is another term for auditory processing disorder. This has to do with being able to correctly and reliably break words into their component parts and get them all in order, which is an essential prerequisite for reading. And no, it's not really something OG teaches; it's something OG assumes students can already do. You need to see an audiologist for that diagnosis. But even then, I'm not sure all audiologists even test for it, and it seems to be one of those controversial diagnoses that not everyone even agrees is a real thing. I'm going to ask our pediatrician for a referral at our appointment next month, but I do fear the pediatrician won't know the "right audiologist" the way a neuropsych would. I'm also going to ask for a referral for an OT evaluation for handwriting and see if we get anywhere with that. My daughter also struggles with forks and knives still, so I think it may really be an OT problem. (Not the same as dyslexia, but I think OT handwriting problems can exacerbate dyslexia handwriting problems and vice versa, in kind of a vicious cycle.)

My understanding from what I've read is that 2 days per week of OG is not enough for most dyslexic kids. I don't remember the exact figure, but I think Overcoming Dyslexia recommended more like 60-90 minutes 5 days per week, if you want the child to actually have a chance of catching up. Yes, I realize this is kinda unrealistic. We're homeschoolers and can rearrange our whole lives around it in a way I know most families cannot, I AM the OG tutor, and we're still *struggling* to meet that time goal. And furthermore my kid still isn't catching up, she's falling further and further behind in fluency all the time (she makes gains, but consistently much smaller ones than her non-dyslexic grade-equivalent peers). Granted, a tutor with the right certifications might do better with her, but I am overwhelmed with the idea of how much time and money it would take to drive to a tutor 5 days per week, and I don't think I could get DH to agree to spend somewhere on the order of $250 to $750/week for tutoring at this juncture anyway. Plus, I honestly don't even know where you find a good tutor... the one we tried last spring had a certification, but I wasn't impressed by her teaching at all. I'm very skeptical of remote tutoring working well.

I've been seeing signs of problems since my daughtee was 4 and she'll be 9 for our upcoming testing at the school. No official diagnosis yet. I still feel like I am feeling around in the dark here. And it's terrible. I expect at some point we will travel for a $$$$$ private neuropsych evaluation, as I'm unconvinced there is anyone worth seeing in our metro area for that. (I have the Decoding Dyslexia list of providers who diagnose dyslexia and are supposedly neuropsychs, but many of them say right on their professional websites that they are NOT neuropsychs. So I don't know WTF to think about that.)

[steamboat185]

Nov 7, 2023 14:33:05 GMT -5 kellady said:

Nov 7, 2023 13:25:42 GMT -5 steamboat185 said:

We paid for a neuropsyc eval this summer for my then 6 year old to and she was diagnosed with dyslexia. We were 99% sure she had dyslexia and wanted to speed up the process. She has been doing private OG tutoring 45 minutes 2x’s a week for about 2.5 months and has moved from below 2% (late preschool early k) of grade level on evaluations to 40% of grade level (testing at early 2nd grade). She still needs a lot of support and is a super slow reader, but it’s gotten better.

I would definitely push for the eval or at least get on a wait list. Edit also if you aren’t seeing growth with OG tutoring maybe see if there is another tutor that they might mesh with better. DD loves her tutor and they get along fabulously.

She is on the wait list for another neruopsych eval.

Excellent. We went from a six month wait to getting in within weeks thanks to a cancellation. I hope you get in sooner rather than later. Our Dr actually has a child with dyslexia too and was so sympathetic about the long waits as they were on a year waiting list at the local university.

[jinkies]

I am not entirely sure what you are asking for here. What areas specifically is she struggling with that she is not already receiving support for?

It sounds like the neuropsych has essentially dx her with dyslexia already, and she is receiving the corresponding supports (OG instruction).

When you say she is receiving OG in school and privately 2x/week-- do you mean daily in school PLUS private 2x/week? Or once a week in school, once with a tutor, for 2x total? I would agree that 2x total is probably not enough, but that wasn't clear to me from your post.

She also seems to already be dx with and receiving medication for ADHD.

You/her parents can request an IEP meeting at any time. It may be worth calling a meeting to address the areas that she is still struggling. My DD gets a lot of executive function support which has helped. She did not need a formal dx of anything-- just observable behaviors/deficits in the classroom.

[joy]

Nov 7, 2023 15:07:07 GMT -5 kellady said:

So here is a list of her diagnosis from a 4/22 evaluation.


DIAGNOSIS: (Codes based on the ICD-10)

F90.2

F41.8

F80.9

F81.0

F98.0

Z55.3

Attention-deficit/hyperactivity disorder, combined presentation

Other anxiety disorder

Unspecified language disorder (per school records)

Specific reading disorder (with dyseidetic or surface dyslexia presentation)

Enuresis

Delays in math likely secondary to attention-deficit/hyperactivity disorder and associated

difficulties with working memory



It looks as if ADHD and dyslexia were diagnosed.  But these aren't actually written into an IEP right now.  Only speech therapy.  In October, DD got a call to see if they could evaluate M to possibly open up her IEP, but they didn't really say what they were looking for.  And now they decided to wait until Feb, the understanding is that they had a meeting with the RR room teacher, school psychologist, and principal to determine whether they would pursue additional assessment.  The psychologist determined to wait until February.  Thus the question of what to pursue.  

But it sounds like DD can request a "full educational evaluation" at any time, so that will be the next step.  Then if she gets into the private pshycholocist, it can can be a bonus, 

I think dyslexia and ADHD supports should be explicitly added to her IEP.

If she is otherwise handling school okay without signs of anxiety, you may need to let the supports work and her adjust to them.

My daughter has come a long way from where she started with reading by doing the Wilson Reading Program. It’s multi-sensory and rooted in OG, but a slightly different approach. Both this and OG are good for dyslexia. Are the private tutors and school reading supports using the same programs? Do they conflict in approach, which could be confusing to granddaughter?

Auditory Processing Disorder is a nebulous and controversial diagnosis. I don’t know where I land on it but it was suggested by our speech therapist. I didn’t pursue it with an audiologist because my research on it was not conclusive. YMMV.

[186momx]

kellady, I asked for them to test DD due to her poor writing and spelling abilities. The diagnosis was a huge shock to all of us including the district psych. I don't remember what tests they did as it was during COVID and I just dropped her off and had to wait in the car.

[sillygoosegirl]

Also, FYI, with holidays and stuff, the February timeframe may well be within the 60 school day window. We signed out consent for testing in October, after requesting testing pretty much at the beginning of the school year, and it put the end of our 60 day window in early February, because the school is barely open in November and December. We begged them to do it sooner (I'm having a baby in January and they are working with us to get it done before my due date, for which I'm grateful). But depending on your state rules for testing timeframe, it can take a really really long time and there can be precious little you can do about it.

[joy]

Nov 7, 2023 18:10:14 GMT -5 kellady said:

Nov 7, 2023 15:44:48 GMT -5 joy said:

I think dyslexia and ADHD supports should be explicitly added to her IEP.

If she is otherwise handling school okay without signs of anxiety, you may need to let the supports work and her adjust to them.

My daughter has come a long way from where she started with reading by doing the Wilson Reading Program. It’s multi-sensory and rooted in OG, but a slightly different approach. Both this and OG are good for dyslexia. Are the private tutors and school reading supports using the same programs? Do they conflict in approach, which could be confusing to granddaughter?

Auditory Processing Disorder is a nebulous and controversial diagnosis. I don’t know where I land on it but it was suggested by our speech therapist. I didn’t pursue it with an audiologist because my research on it was not conclusive. YMMV.

Yes, that is one point my DD made.  Even though school is addressing  them now, DD would like them added to the IEP.
I believe both school and tutor are using the OG method.  DD emailed the tutor (whom M loves) yesterday to ask her about one of the different types of dyslexia (orthographic or phonological?). And tutor said she has packed some different film to lay over the writing for M’s session tomorrow.  Some different method?   The tutor seems upbeat about M’s progress, while DD is getting mixed messages from classroom teacher.  That is partly what is confusing.  And the October phone call about possibly opening up the IEP.  

I have also heard of the Wilson Method.  DD can ask the tutor about it tomorrow.  

Thanks for the input!

Last bit! My daughter had a lot of signs - messing up pronouns, could not rhyme, flipped sounds in words, flipped words in sentences, mirror wrote, struggled to organize words in her head (categorize), struggled to recall words. All of this added up to phonological dyslexia.

[nicolewi]

I was out today and I just saw this. I’m going to be out again for a little bit, but I will try to respond later. I just want to quickly make the point that there are two different things that are frequently confused/are confusing. One is an official diagnosis of a learning disability, which often takes place outside of school. Then there is usually a different evaluation process that occurs within the school, and that is about whether or not the student qualifies for an iep… sometimes even if a student has a diagnosis disability, it still isn’t considered to interfere enough with their daily learning for them to qualify for an IEP.

[redheadk]

I'm running out the door but as far as adding things to her IEP, if she is speech only she may not have had a full evaluation by the school. My daughter qualified for a speech only IEP and did not have to undergo an FIE (Full and Individual Evaluation). In order to add non-speech related services, the FIE needs to happen. I think that may be one of the pieces of the info puzzle you are missing.

[joy]

Nov 7, 2023 18:26:24 GMT -5 kellady said:

joy. Thanks for adding!  As much as our family has discussed dyslexia over the years (it runs in my H’s family), I had never heard of different types being discussed.  More information to look for.  When you were requesting your dd’s evaluation, did you ask for a specific type of test?  List her symptoms and let psychologist decide?  I guess that’s partly where we’re stuck.  I just want all the tests, and I’m sure that’s not reasonable, lol

Actually DD did get an appointment with a pediatric audiologist who might test for this.  After seeing the film, DD went down the rabbit hole and has been calling anyone she can to try for evaluation appointments.  

I met with the educational psychologist before agreeing to testing. My daughter was young and everyone around me would just shrug at what I saw (listed above). She is a late Aug birthday and eeeeeeveryone wanted to write it off as “she’s a year younger than some of these kids!” No. So much no. Knowing the school was unlikely to test her, I went private. We met for an hour where I said everythjng going on and she was like “yes, she needs to be tested” and told me I wasn’t crazy. Relief, man.

I filled out lots of paperwork describing what I saw in my daughter and she did a full educational evaluation. It included IQ, reading fluency, reading comprehension, writing, and math exams with special names that I do not know. She also added in a questionnaire about different mental health diagnoses.

In the end, I got a report with the results of all the tests, psychologist’s interpretation, three diagnoses, and recommended accommodations. I marched that document over to the school and they spent their 60 days reviewing it. The agreed with the findings and most of the accommodations. My daughter’s IEP goes live today, I think.

It was through that testing of comparing IQ to reading fluency and comprehension that phonological dyslexia fell out.

If your daughter can get in with a private educational psychologist for just a discussion first, she may get more insight into what is going on. Going private means that the school doesn’t have to follow the guidance recommended; they can repeat the evals if they want; but your daughter will KNOW what’s going on with her child. This is why I went private. I wanted an open and honest dialogue that was not hampered by “well, we aren’t going to provide this accommodation because her result isn’t severe enough.” I wanted all that pretense gone and to just have someone tell me what was going on.

The private educational psychologist was worth every penny to me.

[nicolewi]

I'm a little confused about where you are in this process and what kind of reports you have in hand. But in any case, here's what we did.

I knew something was different with my 3rd child's learning from very early on. She met all milestones just fine, except that she had speech for articulation issues. But VERY EARLY when I read board books and would say things like, "Where's the puppy?" she wouldn't point to it as my other children had done. Then in preschool, I really got concerned when it became more and more clear that she couldn't memorize the alphabet or numbers or months of the year. I told the school before kindergarten that we suspected dyslexia; they pushed back and said she was so young she just needed time.

We started private tutoring on our own (Barton). It was extremely difficult to find a tutor in my area. We were on a wait list for full evaluation through our Children's Hospital group. Continued to talk to the school throughout all this stuff and she received intervention at school.

After first grade, via dyslexia parent Facebook groups for my state, heard of a place that does a full eval for much less $$$ and could get DD in (while I was still on wait list!). This lady does evals via a non-profit she started and she was fantastic. Did the private eval and diagnosed dyslexia, dysgraphia, dyscalculia (math). I wanted to know for sure what was going on.

2nd grade--Covid--we did virtual school and I worked with her every day. We continued private tutoring virtually and later in person, but that relationship wasn't great and eventually we discontinued. Found a new tutor via new virtual options! Did that until the IEP was ready.

Summer 2021 I requested full eval via the school to move towards IEP (after MUCH pushback from horrible school psychologist). School psychologist told me that they wanted to delay any services 1.5 years due to not receiving school intervention during Covid. I was livid. I said I wanted to proceed anyway. I think I allowed the summer to go by so we could schedule in fall due to our own summer schedule being busy. School did the evals. I really think what also helped me was that fall standardized test results came in and DD's scores were abysmal. I think the school was like, "holy crap, this mom has been on us for years insisting there's problem and we've been pushing her off and now her kid is like at the very bottom of the barrel with reading scores." So finally in November (after talking about problems since prior to kindergarten) the IEP went into effect. Again, we had to show not only that there is a problem, BUT ALSO that her learning differences (which the school will not label as dyslexia or dyscalculia--they almost refuse to say the words at all, which is some kind of thing that seems standard across most districts) are interfering significantly with her school performance and require additional support services.

Now DD receives daily pullout help in both reading and math. I STILL struggle a lot with whether this is "enough". As time has gone on, she is making progress in reading (thank goodness) but it's slow. Math is becoming more of an issue. I thinks she is pretty severely dyscalculic and nobody out there has really found a gold standard for dealing with dyscalculia to date. In all other ways, she's "normal" and she struggles a lot with anxiety and her emotions about learning differently.

I hope my long story here helps. The short version is that if you have not yet pushed the school to start the IEP process by evaluating the grandchild officially, I would say to do so now. They have 60 days then to complete the eval, after which you will have a group meeting to discuss results and see if the school agrees an IEP is warranted. What the IEP does is LEGALLY bind the school to provide certain services. It's protection for your grandchild b/c it means the school must provide services, track and monitor results, and report back to you via an annual IEP meeting (and in other ways as desired). The school needs to move forward now on the process of deciding whether her current learning warrants establishing an IEP.