Testing for Central Auditory Processing Disorders in Young Children?
December 30, 2010 7:13 AM   Subscribe

How do you navigate the tangled maze of getting your child tested for a learning disability (specifically a suspected case of Central Auditory Processing Disorder) in Chicago or north Chicago suburbs? Or even find a trusted professional to evaluate your child?

Since our daughter started preschool at the age of three, I've wondered if she had a minor learning disability. Everyone advised me to wait (and wait and wait) to test her. I didn't talk about it to many people as the few other parents/friends I mentioned it to usually dismissed my concerns with, "It's fine, she'll grow out of it." I'm a relatively laid back mom, I don't need my kid to be an academic superstar or a little genius. However, these nuanced "quirks" seem to hamper her ability to communicate clearly with other kids and with us.

Now she is five, and the situation is not getting better. If anything, she gets increasingly frustrated and angry with us when we don't understand her. Just today, she burst out with, "Why don't you get it?" when I had to ask her to repeat something she was trying to tell us.

It began when she consistently would forget names. Since she could speak, she has frequently forgotten the names of people she sees everyday. Her grandparents. Her best friends at school. Her teachers (who have been the same for the past two years.) When she was younger, no one seemed to mind and her friends didn't notice. But now, her friends feel offended when she addresses them by pronouns or "you!" or the wrong name entirely. Worse yet, when she turns to them and asks, "What's your name?" Then feelings are hurt and she is embarrassed and hurt as well.

When she began to write, she wrote backwards. I don't mean the occasional letter or word. She can write a mirror image of words or short sentences. Yes, I understand a lot of kids grow out of this. But now she is beginning to get frustrated when other kids point it out to her or when she really wants to get it "right'. She will quit trying to write her note or sign or whatever it is she wants to create in frustration. Her teachers have been working with her, so she does write correctly sometimes. When she began to read 2 and 3 letter words, she read backwards as well. ("God" for "dog". "On" for "no".) She sits quietly with books, turns the pages, and looks at the pictures. She'll memorize the story from the book or guess what words are missing if you read slowly along with her. (We know she's guessing because she'll fill in a word that makes sense, but is not written on the page.)

She has reversed words in spoken sentences since she's started talking (flips nouns and verbs, subjects and predicates, etc.) She frequently makes up a word for an object if she can't remember the proper word for it or just uses "it" or "that". And by frequently, I mean everyday. (Ex: "Give me that thing, Mommy." When referring to a ball.)

She has always hated loud noises or even loud environments with consistent noise. Yet, she also wants things turned up louder (the radio, for example) than her father or I are comfortable with ourselves. If she is engrossed in something, it's as if she cannot hear me calling her name even when I'm standing right next to her. I often have to wave my hand between whatever she is looking at and her face to get her attention, or snap really loudly near her ear. At the same time, she can hear things that my husband and I cannot hear sometimes, like a knock at the door downstairs. It is really confusing.

Sometimes we'll ask her a question and she'll seem to answer a different question, then get frustrated when we are confused. Or she'll talk to us about something and when we ask for clarification, she'll get upset with us.

Sometimes she'll remember how to write letters and associate them with their sounds. Sometimes she will just go blank. Today, she asked me how to spell "car". So, I spelled it out for her slowly "C"..."A"..."R". She hesitated and then asked, "How do you do a "C" again?" She's been writing "C's" since she has been 3 1/2. She has a "C" in her name. I don't make a big deal of it, just show her a "C", she copies it, we move on.

She is a bright and engaging kid. She is outgoing, enthusiastic, charming, and funny. Our neighbors call her "the Ambassador" because she will talk to anyone, anytime, anywhere. She sings and follows music note for note. Makes up dances, makes up plays, has an active imagination, is very social. Doesn't seem to have problems with balance or coordination (likes to run, jump, can hit a ball with a plastic bat, swims like a fish).

I would wait and go through the IEP process with CPS except that she's frustrated. She's beginning to dislike preschool (she'll go to kindergarten next fall) because at this point in her Montessori program, she is being given "works" in writing and phonics and so on. Her peers are breezing through them, and she is not. And she knows it. When I asked her pediatrician for a referral to get evaluated, the doctor waved her hand and said, "Oh no, it's too expensive, let CPS do it. They'll test her before second grade if there are problems." Well, hell. I KNOW it's expensive and I can afford it and this is my kid and I don't want to watch her continue to get discouraged and confused and frustrated. Even the doctor was a bit taken aback, though, when my doodling child wrote her full name and age mirror image backwards in the office.

I realize that part of my worry is based on my own experiences with school and language growing up and my personal sensitivities. I struggle with auditory cues, cannot bear to talk on the phone or listen to voice mail because I get anxious trying to decode what is being said (I need to see something...lips, pictures, something!) I got very, very good at figuring out what was being asked of me in school and at work from cues other than auditory cues. I cannot understand what is being said to me if there is other distracting or white noise. My father is very similar. So, if genetics plays any part in this, there is precedence.

Complicating things is the fact that she tested positive for (low) lead levels as a three year old because of a problem with our house (which we immediately corrected after a dreaded visit from the city inspectors). That twists us up with guilt every day.

I've heard of programs such as Lindamood-Bell, FastForward, and so on. I've Googled, I've read articles. But I don't want to guess at what the problem might be, I don't want to give her an armchair or amateur diagnosis, or pick an evaluator out of the phone book. I would be very grateful for any recommendations or any advice you could share.

(Posted anonymously because my regular username is pretty well connected to who I am, and this is about her, not me. Worst case scenario would be that some bully in the seventh grade finds this and taunts her with it someday. You can reach me at jenesaiswhat2@gmail.com if you have other questions. Thanks.)
posted by anonymous to Education (11 answers total) 3 users marked this as a favorite
I would think that CPS must provide early childhood screening services in SOME form for pre-K kids ... my Illinois district does and we're much, much smaller and poorer than CPS. I believe they have an office of early childhood ed (ECE) that you could call and ask? Early intervention is important and benefits the district -- it's so much better for the district if kids get the help they need starting as early as possible, so they can be on track as much as possible and be set up to succeed in school.

Most people in the North Suburbs I know who had testing went through Evanston-Northwestern Hospital, though I don't know how exactly one starts the process oneself. However, if you memail me, I can recommend a general pediatrics practice affiliated with ENH that I think is very good, as well as a pediatric psychiatrist affiliated with ENH who's excellent, if you think that's necessary. That is, if you feel that a second opinion from a different pediatrician would be helpful.
posted by Eyebrows McGee at 7:40 AM on December 30, 2010

Here we go:

Q: What if I believe my child may have special needs?

A: If you believe your preschool child may have a special need but has not been diagnosed and has never attended school, you may go to your neighborhood school and request that your child be assessed. The school counselor/case manager will review your concerns and schedule an assessment for your child. After the completion of the assessment, a conference will be scheduled to provide you with information regarding your child. If the assessment has determined that your child requires special services, they will be discussed with you at that time. You can also contact the Office of Specialized Services at (773) 553-1800.

posted by Eyebrows McGee at 7:42 AM on December 30, 2010

I don't know who you'd call, but I'd start with the University of Chicago hospitals. They consistently get top ratings. Also, it's a teaching hospital (and Pritzker is also a very good med school), which might be good or bad for you. Personally, I like it (I go when I have pleeeenty of time). I've got something that most students don't see too often, so I usually see a doctor-doctor, a couple residents, an intern or two, and sometimes even 3rd/4th year med students. But the students have all read the material more recently than the doctors and are (in my experience) more eager to pick up every detail about your condition to get the right diagnosis.

I'd start by giving them a call.

Good luck!
posted by phunniemee at 7:44 AM on December 30, 2010

A pediatric neuropsych consult might be a good way to get the ball rolling. And, hey, Pritzker has a service for that:

posted by fairytale of los angeles at 8:00 AM on December 30, 2010

Can't speak specifically to finding services in Chicago but from what our experiences have been elsewhere you're better off NOT going through the public schools if you can afford to do otherwise. Our local community does very poorly on providing services and I've been told quietly that assessments in the schools are slanted towards not providing services because of dire budget problems. We've gone through the assessment process twice - once with a private practice and once through the University of Michigan's Center for the Child and Family. I would look for a similar program through Northwestern University or the University of Chicago. You might ask the reference desk at the Evanston Public Library or a good Chicago branch - a librarian friend of mine tells me they've increasingly become the key resource in steering people towards services with many social service agencies sending people their way (without any budgetary support but that's not germane)

Early intervention, even with fairly mild issues makes for better outcomes. We're watching one kid we know flunk out of college for issues that weren't adequately supported in our public schools. It's so unnecessary - bright kid who didn't get the help needed in a timely fashion. I've been told college is the most common time for many learning disabilities to get diagnosed. Seems crazy to me since the earlier a child gets help with these issues the better off they are.
posted by leslies at 8:17 AM on December 30, 2010

We live in Evanston. We just went through this process with my son. My son goes to a Catholic school though. However he would be due an evaluation through the public schools. However it's been suggested that the public school evaluation and process is not desirable- both in terms of quality and time it takes.

We are instead going through Northwestern University. Our initial meetings (parents only) is next month. Two weeks after that my son will start one of three, 2 hour sessions. One week after the last session, my wife and I will be presented with the results. After that personnel from Northwester will work closely with my son's school to devise a learning program tailored to the results.

It took 2 months to get that initial meeting set up. We started the process in late November. We'll have a tailored plan my late Feb. Cost is $5500. We were able to get a note from primary care physician stating that this testing was medically necessary, and so are hoping our med insurance covers most of it.
posted by rryan at 9:21 AM on December 30, 2010

Please memail me. I have specific places to recommend and specific ones to avoid. We've been through this and I would like to help. If you prefer, you can set up a dummy email and then drop me a note: jumbiekangaroo at yahoo dot com. Put "metafilter" in the subject line.

There is very good help out there for you. You are not alone.
posted by Kangaroo at 9:58 AM on December 30, 2010

If you are not a member, I would consider joining Neighborhood parents network and asking this on their discussion boards. http://www.npnparents.org/discus/discmain.php

They are a great resource for Chicagoland area parents to get resources from other parents. There is NOTHING you can ask there that hasn't been an issue for a few other people, and the recommendations are great.
posted by kristin at 10:15 AM on December 30, 2010

I don't have local Illinois expertise, but consider starting with your child's doctor for a referral for testing. That way, you'll have private insurance covering some of it. Find out who the medical experts are and get to them for opinions you can then bring to the school, rather than relying on school referrals. And be ready for lots of tests, inconclusive results, battling opinions, etc. Be prepared to ask questions, and know that you have to be your child's strongest advocate, both through the initial testing phase and once a plan is developed and put into place for your daughter.

You should get started as soon as possible so she'll have a plan in place for school next year, and her frustration is minimized in kindergarten. And realize too, that lots of kids in elementary school are pulled out of the classroom for all sorts of things - speech, OT, reading help, behavioral help - it's a very normal part of the classroom and unlikely to be something she will be targeted for by teachers or classmates.

I second Kangaroo in saying that there are very good resources and you are not alone. This will take time and effort (lots), but you'll be doing what your daughter needs.
posted by Sukey Says at 10:22 AM on December 30, 2010

Here is what I did and why.

I was not tested for anything prior to the first grade. As the doctor said, testing is expensive. With preschool all the accommodations your daughter needs should be given to her through an IEP. Have her tested by the state in kindergarten (not well, but for free). Use the results for the IEP, they will have a good idea of what your daughter needs and how to help her in class.

Then when she is a little older 1st or 2nd grade spend the money and have her evaluated professionally. Use this info for the next 8 years of school.

It is much harder to evaluate a preschooler then a 1st grader. So the results might not work two years from now. And her problems WILL change from now till then.

Spending the money and getting a REALLY good evaluation of her problems is a good idea, people will try and dismiss the findings of a school evaluation. They quiver in their boots when they see a fancy name attached to the report.

Best of luck, I know it can be tough.
posted by Felex at 11:20 AM on December 30, 2010

I think your instincts are right on - if I were you I would have her evaluated as soon as possible.

I am a teacher in Chicago and I'll tell you my experiences with the CPS evaluation process. The CPS process tends to be glacially slow, and in fact they just completely revamped their process so everyone involved, including school caseworkers, is confused. CPS is facing a tremendous budget shortfall so they have an incentive not to provide services, I'm sorry to say. Plus many kids don't get evaluated until 3rd grade because it is difficult to prove that a disability has an academic impact before the kids take standardized tests. I'm sure there are some places in CPS where kids are getting good evaluation services but I haven't experienced them.

Another reason not to wait is that this time in your child's life is a critical one for the acquisition of language and reading skills. By delaying intervention you risk delaying the development of those skills until a point when her brain is less able to learn them quickly, which makes it that much harder to catch up later.

As for what you should do, I'd say go back to the pediatrician and be more firm. Tell the doctor, yes, I know it's expensive, yes I know CPS would do it for free later, but I've decided it's best for her to be evaluated now. If that doctor won't refer you, find another one. And get used to being pushy if you have to be - kids with disabilities need parents who are strong advocates.

Good luck!
posted by mai at 4:00 PM on December 31, 2010 [1 favorite]

« Older Six Months til D-Day.   |   Should I break up with him? Newer »
This thread is closed to new comments.