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

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

By Amalah

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 

 

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Joy
Guest
Joy

I am also a mom of a struggling fourth grader–boy with no health history–just learning difficulties. I got the school evaluation. Waited an entire year for the results just to be told his problems are not significant enough to be eligible for school services. Call your pediatrician TODAY for a discussion and referral. Do not wait any longer. Middle school is right around the corner, it is time to act now. I paid out of pocket for private testing and my school is looking forward to seeing the results so they can help my son.

Amy Austin
Guest

I was a special ed teacher until shit like this drove me out of the field (in Indiana, not Illinois, but close).  The school is breaking the law by refusing to assess the child at the parent’s request.  Breaking.  The.  Law.  Makes me FURIOUS.

I’m going to find the chapter and verse of Illinois law that says so, and I’ll post another comment when I do.  BRB

Laura
Guest
Laura

OK, I’m a teacher in another state, and the laws vary state by state. But, in my state, if you request an evaluation for your daughter IN WRITING (and possibly cc’d to several people so it doesn’t get “lost”), the school district has 60 days by law in which to start the eval. The trick is that the request must be in writing. If it were my daughter, I’d send my written request to the teacher, principal, school psychologist, and the director of special education at the district. I’d be blunt in my letter- her academic achievement doesn’t seem to… Read more »

Dr.BS
Guest
Dr.BS

Sorry, but the district must only respond to the request “within a timely fashion.”  They do not have to evaluate.  The district can deny the request for evaluation if there is not sufficient data that an evaluation is necessary. Regarding the other excuses given for not evaluating, excessive absences are a rule out for special education eligibility.  The evaluator would not be ale to rule out lack of access to the educational environment as a potential cause of the difficulties (not that I would call 4 absences in a year ‘excessive’). Many districts also require schools provide individualize interventions that… Read more »

Jen K.
Guest
Jen K.

I’m not sure how you have been requesting evaluations from the school, but if you have yet to do so, send a letter, certified mail, return receipt requested. There are plenty of samples available on the web. It is really important to go the old-fashioned paper route here (no e-mail, not a phone call, no conversations). If they decline to evaluate, they will have to document this in writing, and you have a chance to formally appeal this decision. Check out your school’s website and download a copy of the special education parental rights handbook. This will set out time… Read more »

Amy Austin
Guest

Ok, go here, read this: http://www.isbe.state.il.us/spec-ed/pdfs/comparison.pdf Specifically at the end of page 35, beginning of page 36, it outlines the formal process for evaluation that must be followed if they are to be in line with state (on the left) and federal (on the right) law. They are violating the law.  They can’t just “wait and see,” and there is a formal process by which to appeal.   Give ’em hell.  They have no right to do this to your daughter.  Sadly, most of the time the only way to get what you are entitled to under the law is… Read more »

Claire
Guest
Claire

You lady, are awesome!

Courtney in FL
Guest
Courtney in FL

If only everyone had someone in their corner like you, Amy Austin! 

For the mom: Keep searching, the paperwork/reading material seems endless, I know. The system will keep sending you in circles because it can. Keep fighting, knock down enough doors till you find the right one. And on the tough days, know you have people cheering you on because we are all right there with you. 

JMH
Guest
JMH

As another teacher in a different state (and former Special Ed teacher), I agree with Laura @ 11:59 (above) Also, you mentioned that your school was “shut down”. Is your daughter in a private or charter school? Those schools don’t have to follow the same procedures to evaluate kids as public schools.

Jenn
Guest
Jenn

As a pediatric neurologist, I third the above advice. If you are in a public school district, request an “individualized educational plan” (IEP) and put it in WRITING via certified mail. In every state I have lived in (4), the district has 60 days to comply — they cannot argue with you or ignore you. If your daughter is in a private school, I think the public school district still has the same legal requirement to evaluate her, but the private school has no obligation to follow whatever recommendations the district comes up with. A developmental pediatrician might also be… Read more »

Christy
Guest
Christy

I was one of these kids, my mom insisted that I be tested and since I went to a private school, my local school district tested me and my private school followed up on the plan. I can remember my teachers every year having meetings with my parents about the plan for me that year.  I was very lucky to have a mom who knew what I was going through (she was LD herself but no one did anything about it in the 60’s) so she was extra motivated to see that I did not fall through the cracks.  I… Read more »

Kari
Guest

I work in the school system in a different state. One thing I wondered is if you ever talked to anyone other than her teacher? Such as the counselor or the school psychologist? And if your school doesn’t have either of those, then an administrator? You probably did based on “being denied” but just in case, don’t limit your advocacy to the teacher. Additionally, sometimes when students get an evaluation outside the school system, they still have to go through the process inside the system, which ends up wasting time. Find out if that is the case, and see if… Read more »

C
Guest
C

How does dyslexia not warrant special services? I’m a teacher in the UK and I have several dyslexic students in my classes. We have just done controlled assessment (part of their GCSE course) and the hoops I had to jump through to make sure they had everything they needed and their statement (our version of IEP by the sounds of it) were incredible. Different coloured paper, some had scribes, others readers, some had both and access to laptops… That statement just baffles me!

Darcy
Guest
Darcy

This is a huge minefield for parents, but everyone who commented above is absolutely correct – Federal law has very clearly laid out the obligations of what school districts must do, how quickly they do it, and how you can appeal if necessary. Email me directly (or to the Wright’s Law website) if you want direct links to the section of the law that deals with this stuff. You can printout the important parts, highlight the good stuff, and attach it to your letter requesting an evaluation. Sometimes, they really are just not aware of what they’re supposed to be… Read more »

Sarah
Guest
Sarah

Long time reader….first time commentator. I am a professor of reading and I study reading comprehension at fourth and fifth grades. While it is true that the school is likely breaking the law, there is also just a lot that happens at these grade levels where reading difficulties in the area of comprehension start to appear. I worked last summer with a student who went to a fancy private school in town and was struggling with reading. It turns out that there was absolutely no instruction in the area of reading comprehension — you either had it or you didn’t.… Read more »

Elizabeth
Guest
Elizabeth

Another out of state special education professional weighing in here.   What other commenters have mentioned is true.  Public schools have to move forward with an evaluation that convenes in a specified number of days to share the results and move forward with a legal plan (IEP) if the child qualifies.  In my state, it is 30 SCHOOL Days.   BUT I also, tend not to work with students of this age or disability category, but I do know this:  The way many school districts define a learning disability has recently changed.  In my state, the criteria a district uses… Read more »

Kat
Guest
Kat

Also: Just kudos to you for not giving up. Your little one is lucky to have such a fighter for a mama — I wish things like this weren’t so difficult but you will get her the help she needs, I’m sure of it. Stay strong and don’t give up!

Erin
Guest

I am just a parent and Random Internet Person, but I would suggest looking into Visual Spatial Learning. It is something I have read a little about because I think my son is a visual spatial learner, and your description of your daughter rang all those bells for me! It is not a disorder or learning disability per se, but it can overlap with LDs such as dyslexia in some cases. Even when there is no LD, being a VSL can cause problems in school because American schools are just not geared toward this type of student, but there are… Read more »

K
Guest
K

If you live in the city of Chicago, another possible forum for finding information and suggestions is the Neighborhood Parents Network (www.npnparents.org). I’ve found their discussion board to be a great resource for all sorts of things. Good luck.

Leigh
Guest
Leigh

I would talk if you can and always write to everyone up the food chair up to the new superintendent to get an eval, Polite, but Pitbull in that you are not going to let it go,
My inlaws learned with the system and special needs it is not triage, but the squeeky wheel that gets the grease and being an incredibly polite pitbull really worked for them.

Elise
Guest
Elise

Another possible resource: http://www.learningrx.com/chicago-naperville/

Jenelle Little
Guest
Jenelle Little

An extra voice here supporting your fight to see what’s right done by your child. Keep up the fight! As a pediatrician, I would ask your doctor to also refer you to a neurologist for evaluation. They can check for subclinical or absence seizures that make it seem like a child is “drifting off into space” or not comprehending, when what’s really happening is the brain “checks out” while have a seizure for a few seconds. Head imaging, especially given your child’s birth history, might also be warranted to check for minor injuries that occurred as a premie. Hope this… Read more »

Jen
Guest
Jen

It’s possible that any special needs your daughter might have MIGHT interfere with a mainstream classroom as the “least restrictive environment,” and that IS breaking the law.  Call the Illinois DOE-special ed. and use a phrase like “has refused testing services for special ed. identification.”  

Would also call the school district’s supt. office along with emailing a supt. directly (cc your daughter’s school principal and teacher).

jen
Guest
jen

And in terms of basic reading intervention: First, ask her teacher what her reading level is–I’m talking grade level equivalent, along with strengths and weaknesses.  Not “blue” or “sparrow” or “Q.5” or whatever, but actual grade level.  Teacher doesn’t know?  That’s a HUGE sign that she’s not getting reading instruction effectively in the classroom, and needs to be dealt with immediately via conference with teacher and admin.   She needs to read in lots of ways every day:  she needs to read aloud to herself, silently to herself, aloud to you, and she needs you to read aloud to her.… Read more »

Christine
Guest
Christine

I think it’s wonderful that you’re on top of this, you’re engaged, and you’re doing everything you can to help your daughter. I just wanted to send out some happy thoughts and prayers in your direction. Chicago does have some wonderful resources for you, and I hope your daughter gets all the support she needs!

Marie
Guest
Marie

This sounds so much like our son who is now a freshman. He has struggled since first grade. He has developed such anxiety over school, reading aloud, looking dumb, making mistakes, not being able to keep the fast pace , you name it! With that, his pediatrician diagnosed him with generalized anxiety disorder NOS and ADD (which i think the inattention came from being overwhelmed) With that diagnosis, I went to the school nurse and counselor and requested a 504 Plan be written for our son. (it is a legal agreement of accommodations made for your child that teachers and… Read more »

Marie
Guest
Marie

Our entire evaluation which included the testing, written review, and the psychologist to sit in on our son’s school staffing was $475. Insurance didn’t cover it either, but much better than $1500 in big cities.

Autumn
Guest
Autumn

Great advice from those above.   Your daughter does technically carry a prematurity diagnosis, which could be helpful in this process.  My kiddo was 3 1/2 weeks early and we worked that label for all we could those first months, but it might be an additional card to play, especially if trying to get insurance to cover things. Another angle to try is many districts have a literacy specialist, a teacher who works on reading comprehension stuff.  It might be worth trying to establish if your school/district has one and try to approach that person with your concerns.  And a… Read more »

Sarah
Guest
Sarah

First of all, while the school(s) have been lacking in letting you know you need to put your requests in writing, they have NOT been violating the law! As background, I’m an SLP in MD and have worked in public schools for 6+ years now.  Take your time and write a clear, unemotional (as possible) explanation of your daughter’s suspected difficulties along with a request for an evaluation (specify the areas). I have to say that I’m 99% positive that the school can still decide an evaluation is not appropriate, but if they do, they need to have a meeting… Read more »

Molly MacDonald
Guest
Molly MacDonald

I am a tutor for dyslexic children, and I agree with everyone here: Get help! Force the school to evaluate and help your daughter, but don’t depend on their help being good enough. If she needs to go to a private reading intervention program, do it! It will be awfully expensive, but worth it. You really can’t succeed in school or life without reading very well. The 5th grade work gets much harder (at least here in Colorado) than the 4th grade work, and the kids have to be able to read. I’m currently working with a very dyslexic 3rd… Read more »

Ashley
Guest
Ashley

I’m sorry, I just have to interject and say this: THIS IS WHY THE INTERNET IS AWESOME. Truly. If you are ever having a Bad Internet Day where it feels like everyone is a troll and you don’t even know why you bother to read comment sections anymore, refer back to this. It’s just so neat to see this side of things, especially between parents. Sometimes when it comes to matters involving your kids, it can be a “too many cooks in the kitchen” type thing… but this is solidly in “it takes a village” territory. And bravo to all… Read more »

Suzy Q
Guest
Suzy Q

Ditto x a million!

Isabel Kallman
Admin

Thank you, Ashley for putting it so perfectly.

And thank you all, for your smart and thoughtful comments. I bow to you.

Ray day
Guest
Ray day

You should bypass the school and get your daughter privately tested by an educational psychologist immediately. Do not wait. Many of them will work with you on a sliding scale. Also enroll her in Kumon. They will help work on her deficiency in comprehension. Please do these two things ASAP.

Ashley
Guest
Ashley

As a school psych (who has worked in several states), I would definently advocate putting your request in writing, but hold off on some of the calling the state or getting an advocate recommendations. As far as advocates go I have encoutered very good ones (who help because they are familar with the law and very bad ones who don’t). Many districts have parent mentor or advocates who work for the school district which can be a good option. Check to see what the response to the letter is, my guess is that it will start the ball rolling and… Read more »

Kelly A.
Guest
Kelly A.

Hi, we are also in Chicago. We used an advocate named Shari Meserve. She is a school psychologist but works privately as an advocate, and I think she does evaluations also. She was great with the school. They trusted her because she’s a school psych.  She helped us get an evaluation and an IEP. Our daughter is a Freshman in high school and doing so much better.  This was 5 years ago, so I just googled her and it looks like she now works for a sped attorney, but it might be worth giving her a call because if she… Read more »

LMo
Guest
LMo

Your story set off a lot of warning bells for me. It sounds as though your child’s rights, under state and federal law, may have been violated. Many attorneys will speak to you free of charge for an initial evaluation. They are usually a great resource for basic information. I’d start with the Chicago Bar Association–they almost certainly keep a list of attorneys, with specializations, and can give you a good, reliable referral. I’m sure other commenters have great practical advice, but I’d look into other options as well.

Leeloo
Guest
Leeloo

I’m sure it’s terrible taste to comment on one’s own question, but I just wanted to do two things: (1) clarify that I have done all the requests in writing (with CC’s!) so I do have a large paper trail going for me.

and (2)…thank you. All of you. So much.

Brooke
Guest
Brooke

Amy and the other commentors knocked this out of the park. Yes. And exactly. I thought I’d add a note that my husband had difficulty reading and writing, and after he had been held back in second grade he was finally properly evaluated and diagnosed with dyslexia. He was administered an IQ test by a company that was able to modify the test to accommodate his disability, and he scored at genius levels! He went from being a “problem child ” directly into the gifted classroom. He went on to get his masters in architectural engineering, a masters in business administration and… Read more »

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[…] advocacy post we found this week is on AlphaMom. One mother wrote a letter expressing her desire to have her daughter evaluated, but the schools just keep giving her the runaround. Fed up with the lack of action, the mom wrote […]

joe
Guest
joe

Are you aware of how much it costs to test one child? In our district I am told it is $10000. This is why school districts are reluctant to test kids. I am quite certain they do want your child to succeed but resources and money are very limited. So let’s say your child is tested and it is determined that she has a learning disability, now what? Unfortunately schools are not able to fix everyone’s problems no matter how great their intentions or how much effort and time is put forth. May I suggest you take matters into your… Read more »