Getting a diagnosis/treatment advice where to start

[Charmom3]

Hello. I have a 10 year old niece who we've been caring for for 5 years. Something has always been off about her learning, but I was in denial in the early grades, and then dismissed by her teachers in 2-4 saying she just needs time, read more, etc. I read to her, she reads to me, every single day and she still reads at a 2.5 grade level. I swear, I work with her, ALOT and the gains are minimal, and short lived. After the crisis schooling, she did better emotionally at home and I've chosen to keep her with me, and she agrees she likes the personalized attention better. However, now that she's older and I'm reading more about curriculum, I am getting more concerned. Her reading comprehension is weak, her math reasoning nonexistent, she is in general not very aware, when she reads aloud she understands little and changes words and leaves others out. I am convinced she's dyslexic (at a minimum) and possibly more. However, I haven't a clue on what that means, or what can be done about it. Do I foster her love for nails and fashion, and just say whatever she manages as far as reading/math, cool? Do I teach her material below grade level (or at grade level that she can't manage without major help for me) and hope for the best? What do I do? I called her doctor on Friday (she has state insurance, she isn't adopted so I have to go that route for her) and when I went to make an appointment I asked if they can help because she has problems with school, and they said they didn't deal with that. I hung up really fast, embarrassed because I feel like I'm a failure and don't know what I'm doing or how to advocate for her. Please, anybody know where for me to start? Should I put her in PS again hoping they deal with it? Am I expecting too much? I would really just want her close to grade level, not needing me to hold her hand for every single thing. I am more the willing and capable to do the work, we HAVE been doing work (isolated phonics, reading, so, so, so much reading, reading eggspress, book projects, audiobooks), but I can't seem to get her up anywhere close to grade level in reading of any sort. 

Does anyone have any advice or guidance on where to start? I don't have thousands of dollars available for private testing (not that I'd know how to find that either...), unfortunately. I just don't know what to do and am so nervous about HS, even though in my heart I know it's best for her. 

 

 

 

[PeterPan]

1 hour ago, Charmom3 said:

she is in general not very aware

Have you had her hearing tested? Do you suspect ADHD as well? Keep in mind girl ADHD can look very different from boys.

Curiousmom gave you a good list. If your ped can give you a referral for evals, that would be good. I don't know exactly how to make that happen with state insurance, so you'll have to talk with them. What you can sometimes do is call the place they're likely to refer you to (for instance, a children's hospital) and ask the children's hospital how you get the insurance to cover it, whether you need a referral, etc. I know people who have adopted kids who have that state coverage and they get evals through the children's hospital. So I think you might be able to make them happen, yes.

The tricky things here are:

1) the school is only identifying things for which they have to intervene. They can choose not to identify a disability saying it doesn't "affect their ability to access their education." So they're technically asking a different question from you, because you flat want to know what's going on, not only whether she qualifies for an IEP/504. 

2) covid has made it more unclear how things will happen. Now *maybe* you'd be lucky and in your district they're just farming out evals to private psychs! It can happen. But odds are they would try to punt, deny your request, make you wait, drag it out.

3) It's unclear whether anything further or medical is going on, either due to family history or prenatal exposures or whatever. Unfortunately, anything medical like that a school is unprepared to handle, making the children's hospital a much better choice for evals.

So IF you can get the insurance to cover private evals, that's going to be your best bet. I would also give serious thought to trying to make a good hearing eval happen and also vision. Some places will do hearing evals for free. Our big state university does them for free and I just heard a local hearing aid sales place does them free too, go figure. 

Did she have any language issues when she was younger? Repeated ear infections or a need for speech therapy? 

[PeterPan]

1 hour ago, Charmom3 said:

I just don't know what to do and am so nervous about HS, even though in my heart I know it's best for her. 

You can do this! Just take it one step at a time, like we all do. 

https://bartonreading.com/students/#ss  This is NOT a dyslexia test, but it is a simple, 10 minute screener for basic phonological processing necessary to succeed with the common intervention programs used for dyslexia. You might administer it and see what happens. 

1 hour ago, Charmom3 said:

her math reasoning nonexistent

Many kids with dyslexia also have troubles with math. You might look at Ronit Bird. She has $10 ebooks that are terrific and even some free ones. 

http://www.ronitbird.com

1 hour ago, Charmom3 said:

Do I foster her love for nails and fashion

Yes!! You can intervene on her reading and get her disabilities diagnosed AND open these doors for her. The two will go together.

[EKS]

First, you should not be embarrassed about calling the doctor for help.  My older son's doctor was the first one to suggest dyslexia as a possible problem--and he turned out to be right.  A good doctor will take your concerns seriously and try to direct you to appropriate resources.

I would assume she is dyslexic and proceed with her schoolwork accordingly.  I would work side by side with her on everything.  Read everything aloud to her (with the exception of whatever you are having her read for practice).  Scribe for her (with the exception of some handwriting practice).  

Then I would also start to research evaluators in your area.  You will want a dyslexia evaluation, obviously--and the person who does this evaluation should be capable of casting a wider net than just dyslexia.  She should probably also have a developmental vision exam and possibly an auditory processing exam.

That said, if you don't have $$$ for evaluations, just assume that she's dyslexic and see how that works.  After getting my dyslexic son evaluated up, down, and sideways, I discovered that with the exception of his vision issues, I was always several steps ahead of the evaluators.  

For reading, if she is good with basic phonics, you might want to try REWARDS Intermediate.  For math, possibly Math U See.  Both of these programs really helped my son.

[Charmom3]

36 minutes ago, PeterPan said:

Have you had her hearing tested? Do you suspect ADHD as well? Keep in mind girl ADHD can look very different from boys.

Curiousmom gave you a good list. If your ped can give you a referral for evals, that would be good. I don't know exactly how to make that happen with state insurance, so you'll have to talk with them. What you can sometimes do is call the place they're likely to refer you to (for instance, a children's hospital) and ask the children's hospital how you get the insurance to cover it, whether you need a referral, etc. I know people who have adopted kids who have that state coverage and they get evals through the children's hospital. So I think you might be able to make them happen, yes.

The tricky things here are:

1) the school is only identifying things for which they have to intervene. They can choose not to identify a disability saying it doesn't "affect their ability to access their education." So they're technically asking a different question from you, because you flat want to know what's going on, not only whether she qualifies for an IEP/504. 

2) covid has made it more unclear how things will happen. Now *maybe* you'd be lucky and in your district they're just farming out evals to private psychs! It can happen. But odds are they would try to punt, deny your request, make you wait, drag it out.

3) It's unclear whether anything further or medical is going on, either due to family history or prenatal exposures or whatever. Unfortunately, anything medical like that a school is unprepared to handle, making the children's hospital a much better choice for evals.

So IF you can get the insurance to cover private evals, that's going to be your best bet. I would also give serious thought to trying to make a good hearing eval happen and also vision. Some places will do hearing evals for free. Our big state university does them for free and I just heard a local hearing aid sales place does them free too, go figure. 

Did she have any language issues when she was younger? Repeated ear infections or a need for speech therapy? 

 

YES I highly suspect ADD (or ADHD inattentive I think now it's called?) 

We live in southern California. I plan on making a general appointment with her PCP amd talk through all this. I've been asked before by her like, is there any other concern? But I always figured they meant healthwise and she's a good kid honestly. I think that's why she's been sort of passed over at school, she's cute and sweet and in the 50th percentile so it's easy to look her over I suppose compared to more obvious cases. 

 

I knew public school had certain requirements for testing and wanting to test, etc. and I am just confused about what a diagnosis would do for me, as a HS parent. She is enrolled in a public HS charter. But I'm not willing to medicate (she's fine the way she is, and her behavior is manageable), so are there resources an official diagnosis would accomplish?? 

 

As for CuriousMom thank you!!! I agree with just taking a step back. I explained to my husband that if I had to choose between a kid who knew nothing but had a great relationship with their parents vs. a kid who was a genius but resented their family, I'd choose the former.

[Charmom3]

26 minutes ago, EKS said:

For reading, if she is good with basic phonics, you might want to try REWARDS Intermediate.  For math, possibly Math U See.  Both of these programs really helped my son.

 

Thank you!!! Yes my mind has been made up as far as hey, she has some issues, but I didn't know the direction to take. Thanks for saying it's okay to read everything to her besides her reader!*!*!

I have Math U See, Beta through Epsilon, and shen I started she didn't like it! I think i might have started her too remedial, because she was just not having it. She can follow math if I explain and personally teach, but the methodology is beyond her. For example, she still can't add 10s or 100s to a number easily and uses her hands - but she can do equivelant fractions and multiple digit multiplication. Yet she'll confuse the words multiply,divide,add,subtract when explaining how to solve a problem. Idk. We've been working through KhanAcademy 5th grade prep, and she's doing okay. She can't learn from Sal or the videos, but when I explain she can manage. 

 

I am looking into the Rewards Intermediate!! We're working through phonics pathways to help some isolated phonics deficits I noticed, but I want a LA program. We've been doing TGATB 3, and she likes it. She's suprisingly good at diagramming, despite getting confused when verbally identifying a part of speech. 

[PeterPan]

10 hours ago, Charmom3 said:

I plan on making a general appointment with her PCP amd talk through all this.

Yes, your MD should have a plan for tackling the ADHD. He could give you referrals for SLP (speech language evals) if she seems to have issues with language or comprehension. There are SLPs who specialize in literacy who do testing in not only phonological processing but things like narrative language. Here's something to get you started on that https://mindwingconcepts.com/pages/methodology  They have LOTS of free info on their site/blog and videos on youtube.

10 hours ago, Charmom3 said:

She's suprisingly good at diagramming, despite getting confused when verbally identifying a part of speech. 

She may have some subtle language issues. Sometimes for this they'll recommend a neuropsychologist, because a neuropsych will typically do more testing than a clinical or educational psych. They can run language testing, tell you if there's a pattern to parts of the brain affected, etc. So if there's an underlying medical condition affecting the brain, sometimes the neuropsychs are the one to find it. 

To me, and this is just me, I would be asking if she has more history of language issues, experienced trauma in her past (because it affects language and social development, things an SLP could test for), is having trouble with word retrieval, etc. 

Getting kids eval'd feels like you're dissecting them, and so you're first reaction is to want to STOP and have it be less. But in reality, complex kids are better served with multi-factored evals. That's what an IEP team is SUPPOSED to do when they actually eval. They should be doing SLP, psych, OT, anything warranted, so they catch stuff. But sometimes, especially on girls, the kids go through the cracks, skate by, are QUIET, and have strengths that mask their weaknesses.

So if you're seeing things, you can pipe up and use what you're seeing as evidence to push for evals. Hopefully the medical system will make it happen for you using her state insurance coverage. 

And I'll just ask, have you ever wondered about spectrum? When you say "not very aware" and have a child with a mix of subtle issues you can't put your finger on, that can be spectrum. Some kids are complex and it takes time for their mix of difficulties to become apparent. She's still at an age where you can get access to services, and it sounds like you're seeing she might need some job services, career training, etc. Those are situations where labels open doors. In our state, qualifying for services like that is based on how many boxes you tick (affected areas). I'm probably not putting that very well. I'm saying don't be afraid to push for EVERYTHING you see being affected and get evals in everything, because this is the time. It may open doors.

[PeterPan]

I saw you said you don't want to medicate on the ADHD. Meds are a funny thing. We waited till 16 on my dd, and it was a bit too long. I'm with you on why and the side effects and even just liking the kid AS THEY ARE. Totally with you. It might be nice to get all these evals, especially some testing related to language, and see where you're at.

For some kids, the meds make a big difference in working memory, and working memory is the scratch or short term memory of the kids. Some kids compensate and learn to read and do academics at their ability level in spite of the challenges, and for some kids the meds enable them to read and do basic things that weren't in reach before. You might look for posts on that by @Ottakee. She has fostered/adopted MANY children and been through situations like yours. 

Do you know how to google site search? You type the terms plus site:welltrainedmind.com into your google search bar. So you could try "adhd meds reading ottakee site:welltrainedmind.com" and see what pops up. https://www.google.com/search?client=safari&rls=en&q=adhd+meds+ottakee+site:welltrainedmind.com&ie=UTF-8&oe=UTF-8  There, take a look.

She also mentions a book series that you can download as free pdfs that she highly recommends. Might not be the stage you're at, but who knows. The name is slipping my mind. 

If you don't want meds and think her working memory is low, you can work on it directly. When I've worked with my ds on it, I try to do a variety of things in short bursts. So like 5 minutes of digit spans, later 5 minutes of me saying a command and him repeating and doing it, and finally a round of Memory the game. So then we're doing it lots of different ways, getting it really functional. 

Another thing you can read about is Executive Function. Here's a book that would have a lot about it under one cover. https://www.amazon.com/FLIPP-Switch-Strengthen-Executive-Function/dp/1942197012/ref=sr_1_2?crid=19QIJBOS6HOY4&dchild=1&keywords=flip+the+switch+strengthen+executive+function+skills&qid=1594642070&sprefix=flip+the+swi%2Caps%2C167&sr=8-2  EF is in the front portion of the brain and the development is delayed in ADHD and other disabilities. So a LOT of what they do in school with supports is about either developing EF or supporting it. They'll say to increase STRUCTURE, that's the buzzword. This book will show you how.

Edited July 13, 2020 by PeterPan

[Storygirl]

10 hours ago, PeterPan said:

And I'll just ask, have you ever wondered about spectrum? When you say "not very aware" and have a child with a mix of subtle issues you can't put your finger on, that can be spectrum. Some kids are complex and it takes time for their mix of difficulties to become apparent. She's still at an age where you can get access to services, and it sounds like you're seeing she might need some job services, career training, etc. Those are situations where labels open doors. In our state, qualifying for services like that is based on how many boxes you tick (affected areas). I'm probably not putting that very well. I'm saying don't be afraid to push for EVERYTHING you see being affected and get evals in everything, because this is the time. It may open doors.

Lots of good advice so far. I just wanted to double down on these comments. OP, you asked what an official diagnosis might do. Don't just think about what she needs now or this year. Think about what she might need when she is 15, 16, or 18 and is preparing for life after high school. My son at 16, for example, is in a job training program through our state, which is for students with disabilities who are at risk for employment difficulties. He also qualified for funding through our county to help pay for things. So far, his funding has helped pay for additional testing that he needs (yes we are still updating and getting new testing at this age), including driving readiness and updated language evaluations, and it should soon help pay a portion of his counseling bills. Funding through the county and state like this can help with employment, mental health, various kinds of intervention, transportation if driving is an issue, and so on.

If you think she might not be fully independently self-supporting as an adult, getting a paper trail for diagnoses at a younger age can be essential for lining things up later on. For someone who has state insurance, there may be even more doors for help that can open up, once a diagnosis (or multiple diagnoses) are in place.

And yes, the more things that these organizations can check off as problems, the more help that they can offer. It sometimes seems wrong to list out all of the trouble areas, right? One day, one of my other kids overheard a Zoom call where DH and I were describing some of DS's issues to a case worker, and that other child said, "I heard what you said, and you really threw him under the bus!"  No no no -- we have to be honest about the issues, or we can't hope to address them well.

I am very thankful that DH and I have a team of people lined up to help DS with transitioning to adult life. We have the financial resources to keep supporting him into his adult years, but no one really wants that, right? We want our kids to reach their potential, and sometimes it takes a team approach to get there. And sometimes it takes the diagnoses to enable you to find the right people to help.

In case you are interested in the opinion of a mom that you don't know on the internet HAHA -- I have one child with dyslexia and another with a slew of things, including autism, and I see things in your post that suggest (to me) that it might be a good idea for your niece to be evaluated for both. The lack of self awareness, difficulty with reading comprehension, lack of math reasoning -- these are all things that are traits of my son with autism and ADHD. He is not dyslexic, so he doesn't have all of the reading difficulties you describe, but his reading comprehension at age 11 (5th grade) was 2.5 grade, and he continues to have trouble in those areas now in high school, even though he has had intervention and has a hefty IEP. The evaluations that he has had over the years have been KEY for improving my understanding of how to help him and help me advocate for him better.

I agree that your doctor is the first place to start, by bringing up the ADHD questions. Even if you don't think you will medicate, doctors can (should be able to) direct you to resources and ways to get help. For educational testing, it's common to be told to go to the school for testing. It sounds like her school was not believing there is a reason to test, though, so private testing may be the way you will need to go. I agree, as well, about the children's hospital. Ask the primary care doctor if they can refer her to a Developmental Pediatrician at the children's hospital. Say that you suspect learning disabilities and attention issues and perhaps autism (or whatever list of things you suspect, but throw it all in there, so your doctor knows the depth of your concerns). Once you have a contact at the hospital in the developmental/ behavioral pediatrics department, you can ask them about the state insurance and how it will work. I know I was told at our children's hospital that children with certain qualifiers can get supplementary insurance through the state, as well, so there may be more payment options than you are aware of.

She sounds like a sweet girl. It can feel daunting to figure out how to make evaluations happen, but you can do this!!!

[Storygirl]

The children's hospitals also should have neuropsychologists on staff, and you might be referred that way, instead of to developmental pediatrics. We've actually seen neuropsychs and not the developmental pediatricians. But developmental/behavioral pediatrics was the first referral we got (even though we didn't end up going there) and somehow it seemed to be the thing for me to suggest to you. Your doctor, hopefully, will have some ideas.

Just one caution -- we loved our first pediatrician, but he didn't see what we did, and he actually told us that he didn't think DS needed to see a neuropsychologist, but we did it anyway. Once we had the report in hand and returned to the pediatrician and showed it to him, he was on board with helping us.

I only mention that, because sometimes doctors have a thing where they want to reassure worried moms that their kid is really okay, and they shouldn't worry too much. We kind of had to break through that barrier with our pediatrician, even though we loved him otherwise.

So be prepared to make your case, if you have a doctor who is that reassuring kind. It helps me to write things down before appointments, so that I can look at my notes and makes sure I have said everything. When the doctor used to reassure me, I would not really press on my points. I've become a better advocate since then.

Edited July 14, 2020 by Storygirl