What to do, if your child is struggling with reading….

1.  Ask the child study team (CST) to evaluate your child.  Write a letter.  Consult with your child’s teacher.

2.  IF the CST cannot evaluate your child, for any reason, and you truly feel that there could be a learning disability, you can go and get an evaluation on your own.  Look for a learning psychologist, check the network in your insurance company.  If you think that something else is going on, discuss it with the pediatrician- could it be audiological or neurological? 

3.  Many studies have shown that there is no advantage to holding a child with a learning disability back.  It will not allow them to catch up, and may discourage them from trying to learn, because they are still going to have difficulty. 

4.  Find a tutor.  Contact your school, and ask if they have a list of teachers who tutor.  A teacher who is familiar with the reading program in your school district, is a benefit.  You can also benefit from learning teaching techniques from the tutor. 

5.  Continue to be positive with your child.  Don’t blame them for their difficulty in reading.  Encourage them, in any way possible.  Keep it fun and exciting.  Don’t stress out your child, or let them know that you are concerned.

6.   Read with your child- unerline the words as you read, with your finger, and go at a pace that your child can follow.  By reading with them, and taking turns, you can encourage them. 

7.  Dry Erase Board!!! For writing letters, words, and homework at home.  It is also fantastic for math problems.  And, it is fun for the kids!

8.  Encorporate learning throughout the day- at the beach, write words/letters in the sand; use sidewalk chalk and practice writing, and reading back what you wrote together; etc….

9.  Do read those really easy books with them- by allowing your child to succeed in reading a book easily, their confidence will increase. 

10.  Don’t forget that your child is a child!  Let them have fun and play with their friends.  Don’t feel embarrassed or guilty that they are behind their peers, it isn’t anyhbody’s  fault!

 

*GASP* I spent a weekend, sick in bed!

Prior to Amy’s testing, just after the meeting that led to her CST evaluation, I was pretty sick, with a high fever.  I spent a whole weekend in bed.  If you are a mom, you know how rare that is!  And, how difficult it is for everyone in the house.  To keep myself busy, I had the laptop with me, and researched and bookmarked all the sites that I could, that were about dyslexia.  Research, organizations, and testing sites.  I was looking for someplace that I could bring my child for testing.  I finally found the site, that started the ball rolling, on getting Amy tested specifically for dyslexia!  The site was informative, and listed all the signs and symptoms.  It appeared that they had been talking about Amy. 

The facility was close to home, and well respected.  I saved it, and wrote down the number.  I even think I called and left a message over that weekend, to make sure that I didn’t forget to call and schedule an appointment. 

I spoke to the secretary on Monday.  She told me that the Dr., brings the parent in first, along with school work, and any reports to discuss the problem and to see if they need to evaluate the child.  Our first appointment was scheduled for late January.  Several weeks later, I received the child study team meeting date, to discuss eligibility/IEP development, and it happened to be the week before.  So, in my hands, I had all three evaluations that were performed, loads of school work (spelling tests, writing samples) that Amy’s teacher put aside for me, and hopefully the knowledge that my child was receiving special ed services. 

The meeting with the learning Psychologist went very well.  I told him about Amy’s difficulty from age 3 on up to now, with learning.  How it progressed, how she had memory problems, how she had Auditory Field Ground deficit/CAP problems.  I told him that the school finally tested her, and deemed her eligible for special ed services, in January of 3rd grade, and that one on one in school tutoring for 44 mins a day had just started that day before. 

He took a look at her work, and finally, I heard the words that I knew would describe my child!  Even without testing Amy, I can tell that she is dyslexic, and that it is most likely moderate to severe in nature.  I finally had a specific name to our problem.  As a scientist, I NEED a specific diagnosis, in order to properly defend whatever treatment I am providing.   This allows me to know exactly that I am doing what is right, documented to work, and effective for that diagnosis.  Now, we just needed to bring Amy in for only the psychological part of the evaluation, as the learning consultant from school was thorough and specific, and the psychologist had a flimsy 2 page report, that was a poor representation of my child.  (She had labeled her at inattentive- no, she was tired, it was JANUARY 2!!!!)  Soon, I could call the school and say, we now have something SPECIFIC!  And, this is what we need to do, specifically!

I brought Amy back about 4 weeks later for testing.  And, in the end, she was found to be intelligent, but, she had difficulty with processing the written word.  She has moderate to severe dyslexia.  Reading will always be a struggle for her.  She will always need adaptive equipment, to help her to read and write.  I am fine with that, if that is what she needs to succeed, then, hey, I am not one to say no.  (I put children in wheelchairs, and braces, I teach them to use walkers, all things that allow my patients to be independent)  He is recommending a computer program that you can scan all the work into (books, tests, and all)  It will read the words, and highlight them at various speeds.  It will enable her to attend college, and be independent.  

I also, researched dyslexia on the internet, and found The International Dyslexia Association, and joined.  I purchased three books for myself:  Overcoming Dyslexia, by Sally Shaywitz, MD; Dyslexia for Dummies; and, the Everything Parents Guide to Children with Dyslexia by Abigail Marshall. 

Child Study Team meeting, for the fifth time

I brought along my husband, this time.  I wanted him to see what I had been facing for the past now 4 school years.  I had requested that they bring Amy’s tutor in, as she was also a teacher at the school, but, they refused, but, did ask her for her opinion, and she wrote her objective report.  Also involved, were her first basic skills teacher, her current third grade teacher, the school psychologist and the learning consultant and the speech therapist. 
As the meeting started, things were different.  The paper piles that they brought in were bigger.  The school psychologist started the meeting out by saying these words: “Before we go into our discussion, I want to let you know that we ARE going to evaluate Amy.”

R-E-L-I-E-F  washed over me!!!  We discussed how Amy was more than a year behind her current learning expectations (like my teacher talk?) in her reading skills, despite our intensive summer learning program that she was enrolled in.  How her reading skills were affecting her in all the other areas of learning, math, social studies, computers.  How she was a creative child, with well thought out stories, but, unable to get those ideas onto paper.  How her 504 B plan was not allowing her to meet those expectations.  We discussed that she would be evaluated by the learning consultant, the psychologist and the speech and language therapist.  We would then meet again, once all testing was complete.

I was impatient.  If you have dealt with a school system, you know that sometimes, they take their sweet old time to get things done.  They really let those federal time line guidelines work in their favor.  The Speech Therapist and Learning consultant had their evaluations completed within a few weeks.  We were still waiting for the psychologist to perform her evaluation.  I had requested that she let me know when her testing would be completed, as I wanted make sure that Amy had a good nights sleep.  Well, she didn’t let me know.  She tested her on Jan 2- yes, the day that all the kids and teachers were back from winter break.  I know that Amy wasn’t well rested that day.  I didn’t find out until weeks later, at the next meeting, that the test was on that day.  The next meeting, added a new person, the special ed teacher…this was looking good!

The ST report, had concerns with short term memory, but all other testing with within normal limits, some borderline. 

The Learning Consultant, had a very thorough test report.  It was 6 pages long.  There were many areas of concern that were raised in her report. 

The psychologist, went over her results, and seemed to lecture me on what Amy needed to do (um, hello, I came to you for help, not a parenting critique- tell me what to do to help Amy).  But, anyway, she found that her IQ was high, and her classroom work was not meeting her intelligence.  Discrepancy between her IQ and her output…

Amy’s teacher and special ed teacher to be, both brought in goals and strategies.  We developed an IEP (Individualized Education Plan).  Amy was classified, as a student with a non specific learning disability. 

Well, that classification was not specific enough for me.  Unknown to the child study team, I had already set up a meeting with a learning psychologist, on my own.  One that specialized in working with dyslexic learners.  That meeting was the following week. 

But, I was relieved that services would start.  We were unable to place her into the special ed class this year for some personal reasons (the special ed teacher is also family), and it was the middle of a school year, we didn’t want to tear her away from the class she was currently in.  She would receive one on one “tutoring” during school, daily, for about 45 minutes, with a special ed teacher, who was trained in the Linda Mood-Bell techniques.  (a visual, tactile and kinesthetic learning experience) She would focus on spelling, and writing, and reading.  Amy would continue the “Great Leaps” reading fluency program in the classroom. 

Third Grade- The reading and writing problems are screaming to be noticed!

We finally entered third grade, in the fall of 2007.  Amy had not only the reading support, but, now was receiving basic skills math in the classroom, too.  We continued to have her tutor come out weekly.  The tutor was very helpful, not only to Amy, but, to myself.  I learned various techniques, that involved tactile, sensory, visual and kinesthetic learning techniques.  As I researched Dyslexia, I learned that these were Orton-Gillingham based, and that they were used to help dyslexic children/adults to learn how to read.  Amy, once again, lucked out in the teacher placement, and was placed in the classroom, of a caring, and concerned teacher. 

I will never forget back to school night, this past year.  Amy’s teacher had all the children write a story about what they wanted to be when they grew up.  Most of the children had well written, well spelt, ideas and stories.  They had separate words, that were not running together, and were able to write on a line without a wavy approach.  They had proper capitalization and punctuation.  But, when I saw Amy’s work, it looked out of place.  It looked like a kindergartner, or an early first grader had written the words.  The spelling was phonemic, many letters were backwards, and there were many words that were backwards (of was fo, for was orf, saw= was, etc).  I didn’t want to let the other parents know that my child had written it!  I was really sad.  I did know that we had a learning problem, but, to see how far behind she was was like a slap in the face. 

I met with the basic skills reading teacher.  She was new this year for Amy.  She was genuinely concerned.  She knew that there was some sort of language disorder going on.  She thought that she was being seen by the speech therapist, but, she was discharged in second grade, and was only seen for an articulation problem not for a speech and language disorder.  I met with the speech therapist, and discussed my concerns and those of the basic skills teacher.  She recommended, requesting a child study team evaluation, AGAIN. 

I went home, and researched dyslexia and dysgraphia.  Amy presented with almost all the signs and symptoms of both.  I wanted to meet with her teacher one on one, before I met with the child study team.  At our parent teacher conference, I had brought a child study team request letter with me.  I met with Amy’s teacher, and we both came to the same opinion, that she was smart, but, her grades were not reflecting her intelligence. 

On my way out, I dropped my letter off to the Child Study Team.  This was in the beginning of October.  I finally heard from them, and a meeting to determine if they were going to evaluate was set up for November. 

Second Grade- The wool is lifting from our eyes

Amy entered second grade, and right off the bat, I knew that this was going to be a special year.  She finally had a teacher, Mrs. Apple,  who, despite having only 5 or so years of teaching experience, had MOM experience.  She had a high school child who had some learning struggles of her own.  She was able to see that Amy wasn’t reading, due to a learning problem, and not a maturity problem.  Mrs. Apple worked hard with my daughter to help her learn how to read.  She was truly concerned.  She was easy to talk to, and we worked together to provide the support that Amy needed to become a reader.  Neither her kindergarten nor her first grade teachers went above and beyond their normal classroom duties.  I am forever grateful to Mrs. Apple for her dedication. 

Once again, I faced the child study team, along with Mrs. Apple and the reading specialist, who was with Amy for the second year in a row.  We pushed, and tried so hard for them to see that this was more than just a child lagging behind.  That there were real problems in the way that she was learning.  That there were discrepencies between her written classwork, and her oral class work.  That she was creative, and had well planned stories, that fell apart as she tried to write them out.  Nope…didn’t work.  She was only 8 months behind learning expectations.  We cannot test her.

October came, and we went for the CAP Testing.  CAP testing includes a full audiological test, as well as testing to see how the child processes sounds that she hears.  The audiological testing revealed that Amy had a high frequency sensory neural hearing loss in her left ear.  Layman’s terms- she cannot hear high pitched sounds on the left.  Now, this was interesting.  She had started speech therapy in first grade, as she had a hard time pronouncing “th” sounds.  Guess what?  She wasn’t hearing them all the time!  “th” is a high frequency sound.  Next she went in for the CAP testing.  The testing wasn’t able to be completed, as there were problems with the CD that they were using, but, early results indicated that Amy did have a CAP disorder.  Auditory Field Ground Deficit.  It too, was only in the left ear, but, was enough of a problem, that she couldn’t pick out one thing to listen to, in a noisy envirionment.  The audiologist was going to complete testing and make her recommendations. 

Once all the reports were received, I went directly to the school guidance counselor, who was head of the intervention team.  We set up a meeting, and developed a very comprehensive 504 B plan for Amy.  A 504 B is a plan that must be followed by the teacher, like an IEP, but, for children who had a diagnosed disability that would interfere with their education, but, who are not recieving special educational services.  We ordered an FM system for her classroom.  The teacher has a microphone, and her voice is amplified, so that Amy can hear her, and not all the other background noise. 

Amy did continue to struggle in school, despite all the interventions that we were utilizing.  I felt like I was swimming in an ocean.  I didn’t know where to go, I didn’t know how to get her the help that she needed.  I started to research dyslexia.  As I read stories of children and their journeys and struggles in school, I cried.  I could say those same things about my daughter.  She was bright, but, couldn’t learn how to read.  She was great in math.  She still didn’t know all the letter names and sounds in first grade, despite being in preschool since she was 18 months old, and despite us reading with her every night.  The child study team refused to evaluate…on and on, I saw my daughters struggles, in other children.  Many parents finally had to go out of the school system for testing.  But, where to go?  I had no clue.  The school wasn’t “able” to tell me.  They could not tell a parent that they needed to go outside of the school system and get an evaluation, and even worse, recommend where to go. 

Amy got lucky, for the last several months, Mrs. Apple had a student teacher.  As the student teacher began to take over the class, Mrs. Apple was able to sit with Amy, and work with her one on one.  Amy’s spelling tests improved, as did her written expression.  At the end of the school year, we once again went to the child study team, and once again, Amy was denied the testing that I knew that she really needed. 

That summer, we enrolled Amy in a summer reading program that is held at a local college.  She recieved one on one reading instruction with a graduate student working on their reading certificate.  It was 4 days a week for 4 weeks.  This was perfect as Amy’s tutor was unavailable that summer to tutor. 

Amy didn’t gain much, but, she didn’t lose her reading skills over the summer.  But, I still didn’t know where to go.  I didn’t know how to get her tested.  I didn’t know if our insurance would cover it.  But, I knew that without a reasonable doubt that she had dyslexia.  And, that I was the one who was going to have to take it into my own hands to have her tested.  But, I had to find out where to go. 

How did it start? When did I notice my childs reading problem?

I will start from the beginning of my journey, as it is the best way to show you all the struggles that I have faced.  It can also, let those who are dealing with the same or similar issues, feel that they are not alone in the world. 

My oldest child, Amy, was born 4 weeks early.  She had a rough start in life.  She was severely jaundiced.  Her bilirubin levels reached 23.7.  The pediatrician told me that some children can have cognitive damage, when those levels reach 24 or higher.  Well, I was a very worried first time mom.  That level of 23.7 had me concerned. 

I am a mom, who is educated.  I work with children in the Early Intervention program (birth to 3).  So, I was on top of all my childs early milestones, which she reached, all pretty much on target. 

Then, in preschool, Amy started to have difficulty with recalling words to songs.  She had difficulty with distinguishing her left from right.  She was always a step behind in her dance class.  In preschool, the 2 years before kindergarten, she was spending 2 weeks on each letter of the alphabet.  She would come home with a project, and could not tell me the name of the letter she was working on.  A letter that she saw repeatedly for 2 weeks in many forms.  She had a hard time learning to write her name.  She wrote many letters backwards, (the letters that she knew).  She couldn’t remember the 4 lines to the poem that she had to remember in kindergarten. 

By the end of kindergarten, she still couldn’t tell me the names of all the letters.  She progressed extremely slowly with the reading program in school.  She was great at remembering stories that her teacher read out loud to the class.  She continued to write numbers and letters backwards.  It took us an hour to do one worksheet at home.  For first grade, she was placed in a classroom with extra reading support, with a reading specialist who came into the class. 

Upon entering first grade, Amy still did not know all the letters of the alphabet and was really struggling to read the most common of words that they were learning in school.  We continued to struggle with homework, spending more than an hour on a worksheet that her peers could complete in 10 minutes.  We also noticed that she said “huh?” often.  She continued to lag behind her peers in reading.  She progressed very slowly. Both meetings that I had with the child study team, led to them NOT evaluating her.  Despite my best efforts to explain to them, that I knew that this was more than immaturity, that this was a true reading problem.  She was not evaluated because she was NOT a full year behind learning expectations.  She was being serviced by an intervention and review committee.  We met as needed to discuss what to do to help her.  They knew that she needed to be evaluated, but, our hands were tied.  She did well enough in her other topics, especially math.  The only problem with math, was that the school uses a math program that relies heavily on word problems, thus her needing to be able to read.  We started private tutoring, halfway into the school year.  Our tutor, was fabulous and genuinely concerned.  She knew that there was a disability there, too. 

Near the end of first grade her teacher recommended that she be held back.  I absolutely refused, knowing that holding her back would not solve her reading problem.  I knew that she had a reading disability.  Holding a child back for that would not allow her to catch up.  I knew that we needed to get outside help, after the second meeting with the child study team led to them not evaluating her.  

Over the summer between first and second grade, I met with a neurodevelopmentalist.  My health and science education led me to believe that she definitley had a hard time processing sounds.  The neurodevolmentalist recommended Central Auditory Processing (CAP) testing.  We scheduled that for October of her second grade year.  Over the summer, she was tutored twice a week.  We were facing this head on.  She entered second grade reading at a beginning first grade level.