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

Nov12

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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?

So you need to start looking for answers elsewhere, outside the school district. 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.

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.

Now. I’m NOT saying you let the school off the hook or anything. Not at all. 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.

In the meantime, have you considered getting her 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

About the author

Amalah

http://www.amalah.com
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 amyadvice@gmail.com.

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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41 Responses to “When the School Can’t (or Won’t) Help Your Child”

  1. Joy Nov 12 at 11:32 am Reply Reply

    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.

  2. Amy Austin Nov 12 at 11:49 am Reply Reply

    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

  3. Laura Nov 12 at 11:59 am Reply Reply

    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 match her intellect, you’re worried about long term effects of her prematurity, and your want her evaluated for dyslexia. ASAP.

    I’m sorry your school and district are giving you the run around. Most teachers truly want to see students succeed. Keep fighting the good fight- and best of luck to you and your sweet girl. As Amalah said, you may want to look into an advocate if necessary.

    • Dr.BS Nov 16 at 10:12 pm Reply Reply

      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 specifically address the concerns and take repeated measures of progress before considering any type of 
      learning disability.  This process, called Response to Intervention (RtI), is best practice and assumes that the difficulty is a result of the learning environment instead of a within the child (we can change the learning environment, we can’t usually change something organic in the child).  Sometimes it seems as though RtI slows down the evaluation process.  However, it actually provides important data and gives the student more specialized intervention and better progress monitoring than most IEPs (special education individualized education plans).
      My advice, while pursuing other options and continuing to request the school-based evaluation ask to speak to the school psychologist  assigned to the building.  Ask what type of pre-referral services and procedures are in place. 

  4. Jen K. Nov 12 at 12:00 pm Reply Reply

    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 frames and procedures to follow for appeal.

  5. Amy Austin Nov 12 at 12:03 pm Reply Reply

    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 to know your rights and fight for them tooth and nail.  So become an expert in IDEA ’97 – the federal law that established a “free and appropriate public education” for all children, and use the words that will let them know that you know your rights and you mean business.

    And be prepared to hire an attorney, if it comes to that, but generally it won’t if you make it clear to the administration that you know your (child’s) rights.

    • Claire Nov 13 at 2:51 pm Reply Reply

      You lady, are awesome!

    • Courtney in FL Dec 06 at 8:56 pm Reply Reply

      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. 

  6. JMH Nov 12 at 12:22 pm Reply Reply

    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.

  7. Jenn Nov 12 at 12:45 pm Reply Reply

    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 helpful, although I am used to sending younger kids their way. Formal neuropsychoogical testing can also be helpful, but you will need a developmental pediatrician, neurologist, or psychiatrist to argue for this through your health insurance — they might be able to justify it as evaluation of a possible medical issue given her rough start in life (vs paying several thousand out of pocket). This neuropysch testing can give you a ton of info and recommendations if it is done well, but unfortunately, the school district has no legal requirement to even look at the results.

    • Christy Nov 15 at 9:27 am Reply Reply

      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 should add that this was all in the southwest Chicago suburbs. The resources are there!

  8. Kari Nov 12 at 12:48 pm Reply Reply

    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 you can get the ball rolling on both of those evaluations.

    Finally, I am not an EC or classroom teacher, so I don’t work directly with IEPs, but I do know that dyslexia is not a diagnosis that receives special services in our school system (I have heard why, but I can’t remember). I wondered if that was why the schools weren’t helpful. But there still might be a diagnosis and services that will help your child.

    • C Nov 13 at 2:55 pm Reply Reply

      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!

  9. Darcy Nov 12 at 1:39 pm Reply Reply

    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 doing (which is criminal in and of itself).

    Also, throw the kitchen sink at that eval request – you want them testing her for EVERYTHING, not just putting her through an IQ test and calling it a day. You know she’s a smartie, that’s not the issue.

    So yes, also go talk to your doctor. But before signing up for a bunch of tests independently, get a special education advocate. The advocate will help you get the district to pay for the initial testing (and help you get them to pay for independent evaluations if you believe their tests were invalid, biased, or wrong). The advocate will also help you get the compensatory educational services your daughter may be due if you can prove that the school has not provided her with the appropriate education she’s deserved for the past 2 years. Oh yes, they get to not only fix what’s wrong, they get to make good on where they screwed up.

    Check http://www.copaa.org to find a good local advocate (they are certainly other places to find good advocates, but that’s a start – I’m not local or I’d be delighted to lend a hand). That’s a good place to start a search for a lawyer if you decide to go with an attorney (very valid decision which is likely to get them to move faster, but will cost you more money). Your local autism society (not applicable in your case, but an excellent resource) will have a treasure trove of people who have had to move heaven and earth to help their kids, and I am confident they would help you with resources, ideas, references, referrals, and any other level of support you might need.

    HUGS TO YOU!

  10. Sarah Nov 12 at 1:54 pm Reply Reply

    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. Unfortunately this is true in many classrooms — the learning opportunities in the area of comprehension are more assessments of understanding (did you get it?) rather than teaching kids explicitly how to negotiate texts. This is especially important at fourth and fifth grades, when the demands of negotiating text shift dramatically and we expect kids to “learn from text”. 

    A little old fashioned tutoring that slows down the reading process and explicitly works on comprehension — what makes and good summary, how do you know? how does that dialogue work? when the author writes “the outfielder” who is that referring to?  Working on non-fiction texts might also help because the early elementary reading diet is so narrative based. I suspect support in writing might also be necessary — another area where instruction is often very lean — your daughter might benefit from direct, explicit instruction in how to write a good topic sentence, how to justify an argument and make an explanation, etc. 

  11. Elizabeth Nov 12 at 2:08 pm Reply Reply

    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 to evaluate learning disabilities must be posted on their website so that would be a good place to check.  It used to be a matter of comparing one set of test scores to another.  This came with a whole host of problems and denied help to a lot of kids with legitimate learning concerns.  The new buzzword is RTI (Response to Intervention). Because your school district wanted to give your child some exposure to the general education curriculum in her new school, it makes me wonder what model they are currently using.  Some schools, especially elementary schools have adopted a school wide system where they screen students 3-4 times a year in reading and math (and sometimes) and compare student performance to either school or national norms.  Differentiated  and research based special instruction is provided to children who do not “meet benchmark”  data on student progress is collected.  If a student is not making progress, the intervention is changed.  Failure to make progress given intervention leads to more intensive support, and eventually a special education referral.   If this is the model your school is using, the state requires this data for special education eligibility.  Find out about what kind of instruction your child is receiving and what services she may already be receiving based on how your school structures its resources.  
    I am not hearing you say that you are hoping for special education per se, just that you want to better understand your daughter’s difficulties and make a plan.  Understand that special education is not magical.  You may be better off with the kind of differentiated instruction I discussed above.  (In meta-analysis, special education has a negative effect size.  I am NOT saying it isn’t monumentally vital for many students, I am saying there is exposure to rich and broad curriculum that special education, as a placement cannot possibly accommodate.  Special education works best when it supports what is already happening in Gen Ed.)
    Anyway, my long winded point is that you need to find out what the eligibility criteria are in your district.  A call to your school psychologist is probably the best bet in answering this question.  

    Let me also weigh in on the dyslexia confusion:  When people say dyslexia, they usually refer to letter or number reversal.  What dyslexia actually means is just “trouble reading”  In most states the areas of eligibility for a reading learning disability are: reading comprehension, reading decoding and reading fluency.  In writing it is simply written expression.  All of these four areas are much broader and encompass many more skills than word or letter reversal.  Though this issue can be a red flag or a general indicator of a larger cognitive processing issue, it is not, in itself indicative of a disorder or disability.

  12. Kat Nov 12 at 2:09 pm Reply Reply

    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!

  13. Erin Nov 12 at 2:16 pm Reply Reply

    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 lots of things you (and a cooperative school) can do to help. Good luck!

  14. K Nov 12 at 2:25 pm Reply Reply

    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.

  15. Leigh Nov 12 at 2:29 pm Reply Reply

    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.

  16. Elise Nov 12 at 4:53 pm Reply Reply

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

  17. Jenelle Little Nov 12 at 5:54 pm Reply Reply

    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 helps, and good luck!

  18. Jen Nov 12 at 6:31 pm Reply Reply

    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).

  19. jen Nov 12 at 6:36 pm Reply Reply

    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.  Nothing more than 35 minutes tops, combined.  Give her books she can feel VERY confident in–super easy, breezy books.  Read them and talk about them the way adults talk about books in a very informal way.  Slowly increase difficulty to books that she can read almost all of the words correctly, but not quite.  Stay there for awhile and read and talk and write.  It’s not ideal that intervention should happen at home, but you can avoid losing precious time while you are waiting for testing.  

  20. Christine Nov 12 at 8:00 pm Reply Reply

    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!

  21. Marie Nov 12 at 10:07 pm Reply Reply

    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 staff will perform to meet
    the needs of your child based on the diagnosis.) My sons learning differences weren’t “bad enough” to qualify for special Ed or extra services. I asked the school for dyslexia testing, but was turned down because his grades weren’t “low enough.”. In our town I heard of a specialist who will do cognitive testing and dyslexia testing. We went to her this summer and had a wonderful full testing and review written up for our son. ( we live in Dubuque, Iowa -only a few hours from Chicago) It has helped in re-writing his 504 to better meet his needs. Getting teachers to go along isn’t easy
    but legally they have to. Keep being an advocate for your daughter and follow your gut.

  22. Marie Nov 12 at 10:11 pm Reply Reply

    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.

  23. Autumn Nov 12 at 11:00 pm Reply Reply

    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 vision screening might not hurt either, just to rule that possibility out.

    But ask for an IEP in writing.  Because a little extra help now can go a huge way.  Good luck!  

  24. Sarah Nov 13 at 8:31 am Reply Reply

    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 with you to explain that. Make sure you get anything they say in writing. 

    Definitely pursue outside resources, because honestly, schools have limited resources/programs available and private services may be better for your daughter’s difficulties. I say may because schools tend to jump on various bandwagons and the current treatment for writing may be very different than what your daughter needs. Same can be true of private clinics, of course. I’ve seen it go both ways. 

    Google wrightslaw blog. They are a (mostly) good resource for how to go about this in the most effective way possible. 

  25. Molly MacDonald Nov 13 at 11:28 am Reply Reply

    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 grader, and I’m stressed!! I so desperately want to him to experience reading as a pleasure and not a complete challenge. You want your daughter to enjoy school, not dread it. You can do this…. everyone can learn to read with enough resources, and YOU can help her get access to them! Good luck!

  26. Ashley Nov 13 at 3:19 pm Reply Reply

    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 of you, being advocates for your children, knowing the law and communicating it to others, and just generally being positive and helpful.

    • Suzy Q Nov 13 at 6:36 pm Reply Reply

      Ditto x a million!

    • Isabel Kallman
      Isabel Nov 13 at 7:48 pm Reply Reply

      Thank you, Ashley for putting it so perfectly.

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

  27. Ray day Nov 13 at 5:49 pm Reply Reply

    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.

  28. Ashley Nov 13 at 6:09 pm Reply Reply

    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 get the correct people informed. If that doesn’t work then go forward with calling the state or getting an advocate. I always appreciate getting a request before the situation has escalated. And Amy- I have definently recommended not evaluating a child for various reasons, they are making progress, their skills are not that different from similar aged peers, but gone ahead with the evaluation at the parent request. Some of these children qualify for special ed and some don’t, but any decent professional won’t let their earlier recommendations bias their results after working with a child and conducting many standardized test results with them (which most people wouldn’t be willing to “fudge” and risk a huge professinal ethics violation, just to stay with what they recommended earlier.

  29. Kelly A. Nov 14 at 9:02 am Reply Reply

    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 can’t help you she can probably help you find someone who can.  Good luck! I know the frustration you are going through, we’ve been there, but it got so much better once we brought someone with us to the meeting.  Kelly.  

  30. LMo Nov 14 at 12:20 pm Reply Reply

    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.

  31. Leeloo Nov 14 at 9:21 pm Reply Reply

    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.

  32. Brooke Nov 15 at 1:24 pm Reply Reply

    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 leads a successful career. After lots of tutoring and patience on the part of his mother and several teachers and tutors, he was able to overcome his disability. Aside from the occasional transposed number and spelling errors that spell check doesn’t catch, you would never know he had it. Best of luck!!!

  33. joe Nov 24 at 7:51 pm Reply Reply

    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 own hands? Go for outside testing to get the details you are seeking and then share the results with the schools and see if they have the resources to meet your child’s needs. You may need to do a lot of work yourself at home as other posters have mentioned.

    Trust me, school personel are working very hard. They do not deserve being bad mouthed and thought of as insensitive or uncaring. It is all a function of money and time and the government guidelines.

    Good luck to you.

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  1. Weekly Web Round-up: Week of November 16, 2012 | NYMetroParents - Nov 16

    [...] 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 [...]

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