When the School Can’t (or Won’t) Help Your Child

Dear Amy-lah,

I am a long (long long long) time reader, and until recently I’ve never felt the need to comment. Your stories and answers have always been right on the money, and you speak the magical language of the internet, which is my favorite.

Unfortunately, I’m at the end of my rope here and I have no idea where to start–or where I’ll end up.

First, some backstory! (There’s always a backstory.)

My daughter was born two months premature, with severe breathing problems and a terrible e. coli infection that was almost the end of us both. Despite these very rough beginnings, she’s grown up into a wonderful, bright, sweet young fourth-grader.

A wonderful, bright, sweet young fourth-grader with something not right. I have no idea what. I just know she has a terribly hard time reading, her comprehension is (sometimes, not always) imperfect, her spelling is bad enough that I have to call her teacher for a translation of her assignments, and there is definitely some number/letter reversal. And yet she is really good at math, excellent at figuring out complex ideas, and she writes completely illegible but amazingly complex stories about everything from life with her little sister to some made up world where everything is cheese. (Not kidding.)

I’ve been working to get her a professional evaluation since preschool–her first school denied it in kindergarten because she was “too young,” and then again in first grade because she’d “missed too much school for a valid evaluation” (FOUR DAYS. In SIX MONTHS.) When the school was shut down at the end of that year, her teacher told me matter-of-factly that she thought I should get my daughter an evaluation at the next school because “something was wrong.” Thanks, Inadequate Teacher Lady! That was really helpful.

When we moved to a new school, our request for an evaluation was, again, denied, because she’d just gotten there and they wanted to see how she progressed. And I’ll admit, she’s doing better, although nowhere near grade level–but I just don’t feel like it’s enough. And I have no idea what to do. I feel like I’m being defeated at every turn, I have no idea what’s wrong–there’s no familial history of this, nothing to give me a clue, and not having a diagnosis means I don’t even have a forum to cry to. I just want to help my baby. I don’t want her to suffer later in life because I didn’t do what was best or fight my hardest, but I honestly know nothing about my resources.

I know you’re not from my area, and that things vary from place to place, but I guess I was just hoping to throw this out there and maybe someone, somewhere, could give me a good place to start. I know she’s starting to notice that she’s not like other kids. That she’s not as good at certain things as they are. And it’s slowly progressing into a dislike of school…which needs to stop.

Amy, please help me help her.

Sincerely,
Clueless in Chicago

So unfortunately, for right now, it seems like your school district is a dead end. Sadly, this happens. You can (and should) keep on fighting for an evaluation, but at this point, even if you get one, I’m not even sure I’d personally trust any of the results. Because it just doesn’t sound like identifying at-risk kids is a priority, and they may very likely come back with more “ehhhhh, she’s fine, or borderline, we dunno, best to keep her in general education and give her more time.” Again, sadly, this happens.

And from what I’ve read, it’s actually more common for girls who are struggling with delays or learning problems to “fall through the cracks” because they don’t tend to display some of the behavior problems that boys are more likely to display (aggression, hyperactivity, problems with rules and impulse control, etc.). Those kids get put in the priority line because they cause disruptions in class and problems for the teacher. Your daughter is a wonderful, bright and sweet young girl who struggles with certain kind-of-nuancy/specific things, and perhaps her teachers are just too overwhelmed with large class sizes and kids who maybe AREN’T so sweet and wonderful to notice that hey, something isn’t quite right. She’s quiet and sweet and well-behaved: What’s the problem?

Start looking for answers outside of the school district

Developmental pediatrician: If you’re concerned about stuff beyond academics (or suspect that her prematurity and rough early go of things has something to do with it), an appointment with a developmental pediatrician would be an EXCELLENT place to start. Your regular pediatrician can refer you to one, though be prepared: You may need to wait a very long time for an appointment.

Your pediatrician should also be able to refer you to other private evaluation options. I don’t know Chicago-area resources first hand that I could recommend (commenters?), but while the state programs tend to focus on the early intervention years, there are surely organizations that offer comprehensive evaluations for older children who may be struggling with, say, dyslexia or other learning disabilities.  Local university hospitals can be a good place to look, or area centers/non-profits that offer services for autism, ADHD, etc. (NOT saying she has either of those, just that these sorts of concerns often tend to cluster up so a place that could help your daughter would likely also offer/advertise help with the more “common” big diagnoses.

Again, your pediatrician SHOULD have a fat little list of places he or she can refer your daughter if you show up and describe what you’re observing and admit that you’re getting nowhere fast with the school district. And if they say they don’t, tell them fine, you’ll be sitting in the lobby while they confer with colleagues and other doctors in order to get you a damn list of phone numbers.

Free local parenting magazines: Another place to look are in those free local parent/family magazines that you see at doctors’ offices, school lobbies, etc. We have a couple of those in the D.C. area and they almost ALWAYS have special advertising sections (or entire issues!) on special needs resources. (The non-profit where Noah received private evaluations and OT invariably has a full-page ad in these.)

(Aside: a quick Google search turned up the Chicago Reading & Dyslexia Center that offers formal evaluations and an informal self-assessment online, if that’s maybe one of your specific concerns.)

Granted, some of these private evaluations may not accept your insurance. We paid $1,500 for a full private psychological evaluation (that covered attention, behavior, learning skills, comprehension and basically everything else a parent could possibly be freaked out about) and our insurance totally balked at covering it. (They eventually covered about half.) This is the not-nice reality of things when you can’t get what you need from the school district — private services can be brutally expensive — but…well, when it’s your child, it’s something you simply figure out your way through, because the alternative of doing NOTHING is just unthinkable. Not happening. Unpossible.

Don’t let the school completely off the hook

Go online and look up your school district’s website. Find the page(s) about special education services. Read EVERYTHING. Every freaking boring-ass word. Especially anything regarding parental rights and the evaluation/intake process. Even though your experience isn’t necessarily uncommon, that doesn’t necessarily mean that rules haven’t been broken or processes ignored. The excuses you’re getting about why they won’t even EVALUATE your daughter are beyond fishy to me, and may fly in the face of a rule or two regarding special education. Consider contacting an educational advocate (here’s a list of Illinois resources) and talking to them about your experience and get advice on what to do next.

Consider some old fashioned tutoring

Either from a learning center or just some extra one-on-one homework help with a private tutor (like a retired teacher or college student majoring in education.) It’s possible that instead of a specific learning disability or developmental issue, she simply needs some coaching and help with her listening and organization skills. Her imagination could be running wild during class or while she’s reading, or she could simply be trying to do everything too fast. Or a good tutor might observe her and — one on one, as opposed to watching her drift slightly below grade level in a sea of other kids — spot some warning signs of a specific learning disability or other “problem.” And that alone could be enough to put you on a clearer path to a solution.

Photo source: AbleStock/Thinkstock

More on Special Needs and Education from Alpha Mom:

1. To Label or Not to Label, That is the Question 
2. Special Needs Services: Public, Private or Both? 
3. Navigating IEP’s and 504’s With Older Children