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The long and winding testing road

Thinking of getting your child assessed for a learning disability? One mother's story offers a glimpse at the inefficiencies and inequities of educational assessment.

By Pia Hinckle
 

It was the end of first grade when we realized that our son Luc was not learning to read as quickly as most other kids. He loved books and being read to but still couldn’t recognize all the lowercase letters of the alphabet. Sight words he had read many times remained a mystery. Maybe it’s developmental, we thought.

We had him repeat first grade. Halfway through the second year of first grade, the teacher started mentioning that there might be “something else going on.” But what?

Evaluating your child: An overview

Read this primer before deciding if and when to have your child evaluated for a learning disability.

This is the point in every parent’s journey when you wonder what you did wrong. It's also the point when you learn about testing, otherwise known as a psycho-educational assessment.

The search for intelligent tests in the universe

The tests themselves vary, but the basics remain the same. Whether your child is in a public school and a district psychologist tests him or you pay a private practitioner, your child will spend three to six hours — depending on the depth of the testing — completing academic and cognitive assessments. As parents you will fill out pages of detailed developmental and psychological history.

What the test tells you about your child and how its results affect his or her access to services may vary radically depending on the expert, the institution, and the region you live in.

The first time Luc was tested by the school psychologist at our neighborhood elementary school, he didn’t qualify for services. He scored too high in math, and his vocabulary was too big. In San Francisco, where we live, children generally have to test two grades below grade level to qualify for services such as one-on-one tutoring as well as legal and financial benefits under the Individual With Disabilities Education Act. If they qualify, an individual education plan, or IEP, is drawn up and executed. If they don’t, you’re dependent on whatever extra services your school can offer.

Luc's test results were disappointing and there was no diagnosis — only the determination that he did not qualify for services. His school did its best to accommodate his needs by modifying homework and putting him in a special reading group, but his self-esteem continued to erode. He had completely stalled in reading acquisition. We enrolled him in a Lindamood-Bell reading program for a year, but he made minimal progress.

On the advice of a resource specialist at a private school, which had waitlisted Luc, we decided to have him tested privately at our own expense.

The benefits (and cost) of private assessment

Twelve hundred dollars and six hours of testing later, we finally had a diagnosis: a reading disorder or dyslexia. The private psychologist spent an hour and a half reviewing our son’s testing results with us so that we understood how his weak short-term visual and sequential memory impacted his reading and the need for an occupational therapist for his painful writing technique.

Her number one recommendation: that he attend a special school for dyslexic learners. We weren’t sure we were ready for that. All three of our children went to a school we loved four blocks from our house.

 
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Comments from GreatSchools.org readers

12/10/2009:
"Thanks for this. I'm going through the same thing with my child in CT. In fact, my son (now 0) was just diagnosed today with severe dyslexia. He's had an IEP since Kindergarten through the school, but he's now in 3rd grade (after staying back a year) and is still at 2nd grade level reading. Evaluator is 'selling' the Dyslexia Institues tutoring program (since he's affilicated w/them - cost is $550/month with 2 hours of tutoring a week + homeschooling by me 6 nights a week), although I'm not convinced that's intensive enough to help my son. Know his school isn't cutting it, so where to turn? I've heard the Ben Bronz academy in W. Hartford, CT can pull a child up to grade level in one year, but it $49K. Yikes! There's got to be a happy median. Open to thoughts/ideas? "
11/17/2009:
"Make sure you can talk to your kid so maybe he will tell u if he or she is having a hard time and you can help them."
11/3/2009:
"wow, this is the story of my son Luke's life. I've been fighting the schools in the same way for 5 years. I am so happy to read this perspective as it helps me to realize that I wasn't imagining that this was really happening to my child. Thank you for writing it."
10/27/2009:
"my son attends a middle school in orange county florida and he has a iep program,however due to financial restraints of the govenment i see where he is beign titled by the teachers and counslors as a behavioral problem and lazy they say he doesnt stay focused and never finishes his work on time. when i remind them that he has a learning disability and that did they forget what adhd is and that he has a iep they say well ____ can do better and he is not working up to his full potenital. my question is how do they know what his full potential is.. they dont have adhd they dont have children at home with this disease. they would rather label him as a trouble maker then work with him and his learning disabliity.they have not been grading him on a curve due to his ability last year they didnt even give him extra time on the fcat testing which he failed..thanks orange county.... and dont bother to contact orange county iep they have never helped me or my son either. i have been trying to get my son a mckay scholarship so that i can take him out of public schools to a better learning system but he has not been approved yet for that. hopeful and looking for something better"
10/27/2009:
"This article is so misinformed that I am stunned. This child should never have been tested by a psychologist. He needed to be tested by a speech/language pathologist (SLP), which is supplied at every school (it's the law). He would NEVER have gone that long without a diagnosis if he had been tested by the SLP. This article is so full of bad information that it should be immediately removed."
10/27/2009:
"I can only speak for what happens in my school and in my district, but I fervently hope that things are the same elsewhere. It is not the teachers or the District most times who don't want to support a child with his/her academic difficulties, it is the rules and requirements placed on us by the state and federal governments. Teachers know that students have disabilities or difficulties that aren't the norm, but are helpless to qualify them for special education if they don't meet certain criteria. Sometimes there isn't an identifiable disability, sometimes there isn't a 'discrepancy' between performance and ability. Thankfully, our site has for several years supported all students with appropriate interventions whether or not they qualify for 'help' or not. Unfortunately, I'm not sure how long we can keep that up as the budget and monies given to school districts is cut and cut and cut more every year along with teacher paychecks, and jobs. Teachers and principals at schools I have experience with are dedicated professionals with a passion to teach children regardless of the way the government continues to tie our hands at every turn, and make public schools look inept and inadequate, when nothing could be further from the truth. I am a teacher, as well as a parent, and as such, I fight to make all my students successful, and school an enjoyable experience."
10/27/2009:
"Pia, thank you for the courage in sharing your experience. We, too, struggled along the bumpy IEP road and uncovered violations, lies, and how uncaring a public school district can be when it's trying to save money! You have inspired me to share our experiences, too. Thankfully, after a two-and-a-half-year losing battle, our child is enrolled in a small, nurturing, private Seventh-day Adventist school where she continues to rank as one of the top students in her class. However, we do provide a number of therapies for her out-of-pocket, insurance funded, etc. Readers, DO NOT completely accept a public-paid school district assessment; if finances allow DO obtain a private neuro-psych & ed-psych eval from your own trusted source. (Acacia Academy in Chicago's western subs is where we took our child) DO question the experts in your child's public school district; DO seek out local Special Education Rights advocacy; DON'T attend the staffing meetings alone; and learn as much as you can about your child's disability. Again, Pia, thank you for sharing and for advocating on behalf of a fast-growing population! Dawn K. "
10/27/2009:
"I too wanted my son tested at school, but when it went in front of the people who say 'yes' or 'no', we were turned down. His 2nd grade teacher was the one who suggested it. They wanted to 'try' extra tutoring first. I thought there may have been a problem, as he just can not concentrate! After $1,500.00 getting him tested, all I heard was to put him on ADD drugs, which doesn't sit well with me either. There has to be a better way for my son to learn. I guess nobody has the patience or time with the public school system..... "
10/27/2009:
"I have a very similar story. I had my son privately tested at the end of first grade by Fred Provenzano in Seattle. The testing took four mornings and the results were very facinating. It was determined no cognitive developement issues were discovered as a matter of fact my son tested in the 98 and 99 percentile in many IQ catagories. However, his non-verbal scores were much lower (although still high average range) than his verbal scores and because of these differences I believe he struggles in school. The private testing really helped when I sat down with the school education team with communication. They understood the test scores I provided and were able to explain to me how my son learns. Unfortunately, my son does not qualify for an IEP. This is very frustrating for me because in the large classroom situation I feel my son falls through the cracks. I know he is a smart kid (I have the tests to proove it), but he struggles so much in the classroom. His report cards are below average and we have been sent the 'summer school' letter in both kindergarten and first grades. I am still advocating for my son and will keep pushing the school to see if they will provide some one on one learning. However, I am a bit discouraged because of the state budget cuts in Washington that my son will not get the help he needs in our public school because they simply don't have the resources. "
10/27/2009:
"To connect with other parents, please feel free to join and post in the Learning and Attention Difficulties Group here at Great Schools: http://community.greatschools.org/groups/11554 "
10/27/2009:
"We had a very similar experience in the San Jose, CA schools. We fought over my child's diagnosis and services for years, and received only minimal services, despite having two private assessments in hand from well known and well respected institutions, done at our expense. We wound up refinancing our home multiple times and incurring a huge debt to try to give our child the support which was required. Sadly, in our experience, the school district appeared to do everything they could possibly think of, including outright lies, to keep our child from receiving services which unfortunately, cost money. SJUSD is firmly committed to staying as within budget as possible - they are NOT committed to students which they obviously feel are on the margins. Sad, but unfortunately, true."
10/27/2009:
"Thank you so much for posting your experience. I have a four year old son who just started preschool. He's speech delay has always been a concern but we're now realizing that it may a cognitive issue. He also has difficulty with fine motor skills. We are about to begin the process of requesting the OT & pycho-ed testing that you wrote about and are already experiencing the difficulty of even setting a date. In order to save some time I may just pay out of pocket and go with my hunch that he does in-fact need additional services. Again, thanks again. Your posting made me realize that it's up to me to speed the process. It's just unfortunate that we have to go through such obstacles."
10/21/2009:
"Very interesting"
10/21/2009:
"After a few years of hearing that my son was sloppy and lazy, and getting no guidance of what I or we could do to help his writing, I finally requested an IEP. The testing was very hard on him. He did not qualify for the IEP saying 'how bright he was and how he uses big words and YES, his hand writing is awful but so is mine'. Even though I gave results from private testing (we couldn't afford to continue PT every week even with insurance). We did get him a 504 plan which has helped with accomodations in the classroom. I feel guilty for stopping the private PT. We had already spent thousands of dollars on vision therapy which did some PT but he moved on from that and reads great...but the writing thing, and getting those ideas from his brain to his hand to paper is still a major block. "
10/21/2009:
"I must say that I am dissapointed in what information is placed out there for vulnerable parents who have concerns over their child's education. Unbelievable. I am a School Psychologist in Orange County California and I have studied for 7 years to receive my Masters and Credential to help children, especially those with academic and behavioral difficulties. Those who work in the school system work their tails off to help students (our passion). I cannot speak to what this parent experienced (other than to say that some of the things said in her story are not necessarily true under the law) but I can empathize with it. This is my advice- If you suspect your child is having difficulties in school do the following. - Get involved as much as possible (help with homework, attend conferences, volunteer, provide tutoring, etc.) - If that is not working ask for an SST which is a Student Study Team meeting at the school which will be a forum to address concerns and the schools approach to asisting your child. Assure that a result of that meeting is not just a venting session but ends up in an intervention with a specified amount of time and data tracking. (for example: if your child is low in the area of reading fluency then assure there is some time or program implemented throughout the school day in small groups to assist and enrich her/him in that area with progress monitoring. - Typically if your child does not respond to the intervention (which means they are progressing not that they are immediately at grade level) there should be a more intense (more times per week or more time per session) of an intervention put in place. If your child does not respond after 4-6 weeks at this point then another SST meeting should be called. - At this meeting a Psycho-Educational assessment should be considered and an assessment plan signed (unless the team agrees to attempt a different intervention). Hint: Always check your childs hearing and vision regularly. Schools do checks during specified school grade years. "
10/20/2009:
"This family was smart about realizing the schools are not fulfilling their legal obligations and that they work hard to keep students out of special ed. I only wish I had had the funds to go the private route for my son as this family did. It's shameful what the school districts aren't doing for these vulnerable students."
10/20/2009:
"Thanks for sharing. As the government looks at putting more pressure on teachers they need to remember a classroom teacher is a teacher of their area and not a psychologist, social worker, or special ed teacher. Teachers need support from various areas to support the child and the parents to be involved- so many parents don't get involved and leave issues up to the teacher. All while the classrooms are growing in size and supplies are becoming more limited we expect to squeeze more from a teacher who makes a lot less money than many professions and are required to maintain annual professional development out of their own pockets. No wonder we are having teacher shortages."
10/20/2009:
"I have 4 learning disabled children. My daughter was in first grade when I first noticed her difficulties and I diagnoised her with Dyslexia. It took the Hawaii public school system 5 years to 'qualify' her for SPED. But they had no one knowledgable with strategies for Dyslexia. She entered 9th grade at a second grade reading level. All the years in school was a waste of time and her self esteem was shot. I finally found the Dyslexix Tutoring Center of Hawaii. This non-profit group was the ONLY beneficial help for over 12 years of my daughters edcation. She is now attending college and is loving it. A dream that I thought she would never achieve!! "
10/20/2009:
"I agree with this article for the most part. HOwever, we went the private testing group only to be put on the back burner as well by our Public school. Our school is one of the good ones, however it is still not support our childs needs - often not giving the specific support as per our child's IEP. We are thinking of switching to a private or even home schooling to provide the best assistance for our son."
10/20/2009:
"May i request more details and links for reading materials about this article. My kid has the same nature of a problem that passed with u r kid. I am worried about him and don't know what to do"
10/20/2009:
"As the adage goes, you get what you pay for. I think the public school tests should be something additional you do for more information, but if you really want services, you need to go the private testing rouge. If there is something wrong, they will find it because they want you to pay for private services. The oppostite is true of the public system. They want to delay finding something is wrong so they won't have to pay for it."
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