Not My Child
Chapter 1: Introduction
Iam a mother of four children (three boys and one girl), two of whom are my stepchildren that I raised from the ages of 3 and 7. I like to say I have two sets, since by the time I had my biological children my older children were 12 and 8. All of them have been diagnosed with a learning disability and the younger two also have diagnosis of autism spectrum disorder. Before writing another word, let me tell you, I have four of the most awesome children in the world.
My daughter, Nala, began exhibiting signs of anxiety at age 3, but the path that led to her diagnoses was not an easy one. In fact, I only discovered that my older children had developmental impediments later in their academic journey.
As an instant mom – I did not know much about child development and was unaware that her constantly turning on all the lights in the house in broad daylight was a sign, as simple as it may seem. Fortunately, what I didn’t know about certain telltale behaviors I did know about educational
milestones. Their grandmother and my mother was a teacher for many
years, which supported me in ensuring that my daughter and son always completed educational workbooks to have the ability to maintain their grade level academically, which, in turn, helped them both become top students in their classes. As a result, they were accepted to two of the top private schools in the Washington, D.C. area. By this time my son literally did not do homework at home – he’d finish it during class since he completed his classwork before everyone else – and my daughter was at the top of her class and a grade ahead of her classmates. Did I already say how awesome my children are!
During Nala’s first year in private school her reading teacher told me she’d been placed in a reading remediation group to help with reading comprehension. Admittedly, I harbored feelings of confusion and guilt about her placement. “Where did I drop the ball?” I thought, “She can read and comprehend,” I had taught her myself. Despite my feelings of failure, I chose to trust the teacher at her word, if she said a homework assignment should only take 30 minutes but it took Nala five hours or longer to complete, clearly there was an issue that should be addressed. I voiced my concerns with the teacher and was repeatedly told that everyone developed at different paces and not to worry. To be clear, Nala did not have bad grades; however, as she progressed through grades three to eight her eagerness to turn in her homework became sporadic. She began to misplace assignments, her note taking was poor and as a result, her tests scores were low. Needless to say, her self-esteem and anxiety began to take a beating.
Each academic year, I would voice concerns and was told – again – that she was still developing. When I finally began to ask for developmental testing, I was met with an apathetic response, that testing wasn’t something the school offered.
“I feel like I’m letting you down since I’m not getting A’s and B’s,” were my daughter’s words to me in seventh grade. At this point her grades ranged from B’s to C’s, although we worked together to make sure she was studying and turning in assignments. During this period, I also noticed that her notes from class or those taken from her textbooks were always incomplete or factually incorrect. I voiced my concerns to a colleague and she said, “I wonder how her mind works...” to which, I had no idea or response, but I did know my daughter was struggling and needed help.
One day, my best friend and I decided to Google Nala’s symptoms, “Auditory Processing Issue” stared back at me from the screen. I acted immediately, and took her to an audiologist, who said exactly what the teachers had been saying, that she was fine, only this time it was recommended that I take her to get a neuropsychological exam.
After two separate testing sessions, she was diagnosed with ADHD, dysgraphia, and anxiety. We were hopeful and optimistic; finally, I had an answer and could figure out how to best help my child! However, my relief was short-lived when her school refused to offer her a high school seat because they felt she could not handle the coursework. Incidentally,
the decision was not because of her learning disability, but because my discovery came too late.
Section 1: Denial - A Mother’s Regret
At the same time, my oldest son, Jase, was doing well in his classes, however, his grades were inconsistent and his assignments were either incomplete or missing. After two years, his school counselor suggested he be tested. “Why, he’s not failing,” I thought, and didn’t make it a priority. There were also people with male children telling me that his behavior was typical for boys, and once they get to college, “It’s like the light turns on and they pull themselves together.” Instead of having him tested, I micromanaged him by printing out his homework assignments and following behind him with checklists. By the time his senior year arrived, he had been accepted to every college he applied to, and his SAT scores were great!
With his sister’s recent diagnosis, I began reevaluating not getting him tested and because my desire was for him to have the best chance at the collegiate level, I decided it was time. By the end of his senior year, he was diagnosed with dyscalculia and executive functioning disorder. It was too little, too late, Jase refused to accept the diagnosis and went into his freshman year with a full and challenging course load because he believed just as I did that he was capable of doing the work. Although the school he attended offered learning disability services, my son would wait until he was in dire need each semester before using them. Long story short, his executive functioning disorder finally caught up with him
and he was placed on academic probation at the end of his first year
Denial is a terrible thing as a parent. Both of my older children were getting by academically; therefore, they didn’t need to be tested – at least that’s what I thought. But their journeys may have been different if I didn’t base them needing help on failing grades. Imagine putting your children through private school and a semester of college, only for them not to succeed because you were in denial about the fact they needed help that could have supported their success.
Section 2: Which Child Is at Risk?
During the time Nala was being tested, my third son, Asar, was 4-years- old and it was determined he needed speech therapy. By the time he turned 5, the school wanted him to repeat pre-kindergarten, as they felt he wasn’t mature enough and his birthday made the kindergarten cut-off date by two days. My intuition prompted me to ask if he needed to be tested and, not surprisingly, the response was the same, “Give it time, he is still developing.”
In kindergarten, his report cards were a clear indication that he was not progressing in certain areas. Once again, I contacted the school and asked for him to be tested; especially considering his siblings had learning disabilities. The school took a page out of my book and said that because he was not failing, testing was unnecessary. However, if I still wanted it done by the end of the school year, they would test him at the beginning of the next school year. My son’s family history and the following
indicators placed him at high-risk; therefore, I was adamant about him
being tested. That very next school year, we received his results – anxiety, dyslexia, and low executive function and working memory.
Most of the time, children have slight delays that are age appropriate, which is what educators will tell you when you voice any concerns. However, there are circumstances that may increase the chances of your child being at risk. Which are as follows:
Low Apgar scores
Low birth weight and/or preterm birth
Hospitalization for longer than 24 hours in a neonatal
intensive care unit
Difficulty with suckling, sucking, and swallowing
Chronic otitis media that may result in intermittent
Genetic or environmental conditions
Family history of LD
Adopted child status
Family history of spoken and/or written language
Exposure to environmental toxins or other harmful
Limited language exposure in home, childcare, and
Delay in cognitive skills
Not demonstrating object permanence
Limited understanding of means–ends relationships
(e.g., using a stool to reach a cookie jar)
Lack of symbolic play behavior
Delay in comprehension and/or expression of spoken
Limited receptive vocabulary
Reduced expressive vocabulary (“late talkers”)
Difficulty understanding simple (e.g., one-step)
Monotone or other unusual prosodic features of
Infrequent or inappropriate spontaneous
communication (vocal, verbal, or nonverbal)
Delay in emergent literacy skills
Slow speed for naming objects and colors
Limited phonological awareness (e.g., rhyming,
Minimal interest in print
Limited print awareness (e.g., book handling,
recognizing environmental print)
Delay in perceptual-motor skills
Problems in gross or fine motor coordination (e.g.,
hopping, dressing, cutting, stringing beads)
Difficulty coloring, copying, and drawing
Attention and behavior
Difficulty changing activities or handling
disruptions to routines
Perseveration (i.e., constant repetition of an idea)
You may look at this list and wonder how can a child not be at risk, right? Every child is different and if your child shows any of the above signs, it does not mean he or she has a learning disability. However, it does mean he or she is in the high-risk zone. In my children’s case, they inherited their learning challenges from their father (who was undiagnosed) and then they exhibited a number of the other indicators from the list.
Do not live in denial concerning the chance your child may need to be tested. As a parent, you are empowering your child and yourself for success by discovering early on if there are any learning challenges and managing them. In the following chapters, I will discuss all the ways to have your child tested.
Chapter 2: Something is Not Right
As a parent, you get a feeling when something is off with your child, and the alarm may sound in various situations. It may happen when you are assisting your child with homework and it takes him or her two or more hours to complete, even though the teacher says only an hour of homework is assigned each night.
We assume our child is not focused enough and needs more of our attention to complete various assignments. Then, we find it still takes our child two or more hours, not to mention added anxiety caused by our hovering. Or, it may be when you get your child's report card and see inconsistencies. In elementary schools that utilize a non-grade system, you will see that your child is constantly given a grade of “still developing” from the beginning of the school year until the end.
When you start to wonder how you can assist your child or if you should be concerned, you turn to the person who issues the grades; the teacher. In the public and private education world, they typically will give you the
following response: “The rate at which your child is developing is typical for all children their age.” I don’t know about you but I was raised to believe that there is no one more qualified to address a parent’s concerns then an educator. Unfortunately, this can be when the tide turns for your child. Allowing the education system to convince us as parents to believe that nothing is wrong is the first step to disempowering yourself as a parent. I will discuss what this looks like and means later it the book. Trust your instincts!
When you suspect something is amiss concerning your child’s development, don’t depend on the educational system to alert you in a timely manner. By timely, I mean before your child loses hope and becomes frustrated with themselves and school. Though there is always space for course-correction, the younger he or she is, the easier it will be. For example, after my daughter’s dysgraphia and ADHD diagnosis at 14, she agreed to take ADHD medication but refused any additional treatment, though she was clinically depressed and experiencing anxiety. At every turn, she argued with her therapist and refused the idea of going to a school that could help her navigate the dysgraphia and ADHD.
On the other hand, my now 9-year-old son, Asar, who has been diagnosed with dyslexia and pervasive developmental disorder since the age of 7 has no issues with the therapist, occupational therapist, speech therapist, and reading specialist he has become accustomed to seeing weekly. Working with a therapist is just a part of life and daily routine, since he was diagnosed in first grade. By the time he gets to middle school, he may not need as much support, which is ideal since children
are expected to write more reports and take more tests during this period. In essence, younger children are more accepting of change than older children.
Section 1: Testing
Now that you know the signs of development disorders and suspect your child may have one, the first step is to get your child tested. The key is knowing which test will assist you in gaining the most comprehensive understanding of how your child’s brain functions. In my opinion, the best test for this is the neuropsychological (neuro-psych) test.
A neuropsychological test is an assessment of how one's brain functions, which indirectly yields information about the structural and functional integrity of your brain. A neuropsychological evaluation involves an interview and the administration of tests by a clinical psychologist. The tests are typically pencil- and paper-type tests. Some tasks might be self- reports, meaning they are completed by the patient with assistance from a technician and as the parent you will be asked to complete a form as well, but the majority of the tests require administration by a neuropsychologist.
Neuropsychological tests (unlike bedside cognitive and behavioral neurologic screens) are standardized, meaning they are administered and scored in the same manner to all patients regardless of their differences. An individual's scores on tests are interpreted by comparing their score to that of healthy individuals of a similar demographic background (i.e.,
of similar age, education, gender, and/or ethnic background) and to
expected levels of functioning. In this way, a neuropsychologist can determine whether one's performance on any given task represents a strength or weakness. Although individual scores are important, the neuropsychologist looks at all of the data from the evaluation to determine a pattern of cognitive strengths and weaknesses and, in turn, to understand more about how the brain is functioning.
Neuropsychological tests evaluate functioning in a number of areas including: intelligence; executive functions (such as planning, abstraction, and conceptualization); attention; memory; language; perception; sensorimotor functions; motivation; mood state and emotion; quality of life; and personality styles. The areas addressed in an individual's evaluation are determined by the referral question (what the referring doctor and patient wants to know), patient's complaints and symptoms, and observations made during interview and test administration.
Even though this is the test I prefer, school systems generally prefer to administer a psycho-educational evaluation. This test focuses on the mental processes underlying your child’s educational performance. Some of the same tests administered during the neuropsychological evaluation are administered during the psychoeducational evaluation testing. In most cases, results will indicate if your child has learning challenges. However, if you do not think the results are accurate, you have the right to request additional testing (a full neuropsychological test).
Even though the neuropsychological test will give you a comprehensive view of what is going on with your child, there are three additional tests I also suggest: Central Auditory Processing Evaluation (CAPD), Sensory Integration and the Sensory Integration Praxis Test, and a Comprehensive Language and Speech Evaluation.
I know what you may be thinking. “Do I really need to have my child take all of these tests?” The answer is YES! My son’s school only administered the neuropsychological evaluation, but his issues were deeper than that! The school will only look at the simplest way they can say they are helping your child. I pose this question to you: Do you want to be the parent whose child constantly struggles and their self- confidence dwindles every year because the school says they are helping them? To be an empowered parent you will need to go a step further and get additional testing and verification from a doctor that you can present to school officials. I will discuss navigating the school system with your child's results in Chapter 5.
The Central Auditory Processing Evaluation is special tests designed to assess the various auditory (listening) functions of the brain. The tests are often broken down into four subcategories including monaural low- redundancy speech tests, dichotic speech tests, temporal patterning tests, and binaural interaction tests. This test helps define the specific auditory processing difficulties that a child may be experiencing and to recommend appropriate remediation.
Performance on auditory processing tests is measured according to chronological age expectancies. It is generally believed that development of the auditory processing pathways continues up to age 12 or 13. If your child has an Auditory Processing Disorder (APD) it will show itself as difficulty understanding speech in noisy environments, following directions, and discriminating (or telling the difference between) similar- sounding speech sounds.
Sometimes he or she may behave as if a hearing loss is present, often asking for repetition or clarification. In school, children with APD may have difficulty with spelling, reading, and understanding information presented verbally in the classroom. Often their performance in classes that don't rely heavily on listening is much better, and they typically are able to complete a task independently once they know what is expected of them.
Auditory Processing Quiz
1. Does your child speak louder than normal?
2. Does your child like the TV louder than normal?
3. Does your child say “huh” or “what” often?
4. Does your child need directions, requests, or information repeated?
5. Does your child confuse similar sounding words?
6. Does your child have a greater tendency to ignore you when engrossed in something?
7. Does your child have difficulty telling which direction you are calling from?
8. Does your child confuse or forget directions if several are given in one sentence?
9. Does your child have unusual sensitivity to or complaints about noise?
10. Does your child delay before responding to questions or instructions?
If you answered yes to at least five of these questions, then I suggest
taking your child to be tested. You may look at these questions and say,
“All children have these issues,” or “That’s normal for children.”
However, imagine your child truly does have an auditory issue but you failed to get them tested. The test typically takes an hour to administer, the same amount of time it takes to eat lunch or watch your favorite show.
The Sensory Integration and Sensory Integration Praxis Test (SIPT) is administered by an occupational therapist. This test assesses certain aspects of sensory processing or perception that are related to language development, academic achievement, or social behavior. They also evaluate your child’s ability to cope with the tangible, physical, two- and three-dimensional world. The evaluation is comprised of 17 tests that fall, roughly, into four overlapping types: motor-free visual perception, somatosensory, praxis, and sensorimotor.
What is Sensory Integration and Praxis, and why should you be concerned about it? Sensory Integration is how the brain processes sensations (such as from the skin, eyes, joints, gravity, and movement sensory receptors) and organizes them for use. Praxis is the ability by which we figure out how to use our hands and body in skilled tasks like playing with toys, using a pencil or fork, building a structure, straightening up a room, or engaging in many occupations.
Sensory integration and Praxis are important to your child because it affects their ability to function in the classroom. For example, my son has difficulty writing due to his sensory integration and praxis, and he receives occupational therapy in school to assist him with learning how to write. His muscles are underdeveloped, which means he can mimic
handwriting but it never looks like the handwriting of a child his age. This test also indicated that my son has a weak vestibular (core), so in the classroom he is using his concentration to sit upright in class (mimicking) like his peers while physically his body is tired. After receiving therapy his classwork has improved because he can now focus more on classwork.
Comprehensive Language and Speech Evaluation is the measurement of a person’s communication skills, and helps determine if the person has problems communicating. A speech-language clinician conducts the evaluation and observes the child performing different tasks. The clinician will evaluate your child’s:
Understanding and use of different words
Correct use of words in correctly-formed sentences Use of language for different purposes Pronunciation of speech sounds
Physical ability to produce speech
Fluency or smooth flow of speech
The clinician also briefly checks the child’s motor skills, which involve coordinating muscle movements. Large motor abilities like walking and running are checked. Fine motor activities like writing or drawing are
also checked. A hearing screening is part of any speech and language evaluation. There may be a hearing problem that may affect speech and language development. The clinician also checks the child’s mouth, looking for any structural problems with the tongue, lips, teeth, or roof of the mouth. The clinician uses formal tests and informal observations of the child’s communication abilities. The clinician also notes such things as the child’s attention span, activity level, play skills, or any unusual behavior.
Why is this testing important? Your child’s ability to speak, read, and understand what is being taught in class is affected by their speech and language comprehension. For example, even though I believed Asar, had reached all the language milestones, when he was in pre-kindergarten, his teacher asked, “Do you understand him when he speaks?” I thought about it and realized that as a parent I was responding to his non-verbal requests because I really did not understand what he was saying 75% of the time, while my son’s teachers and friends did not understand him at all. After he was tested at age 4 he was diagnosed with articulation disorder and as time went by he was also diagnosed with dyslexia and received assistance with reading and writing.
Even though it sounds like a lot, it is possible that you will only need to have two of the three additional tests (outside of the neuropsychological evaluation) administered to gain an idea of how your child’s brain works. I had three done for my two youngest children and I am happy that I did. Do not feel overwhelmed with the idea of testing because you can have it done at your own pace. But where do you go? Quizzes for the
Sensory Integration and Language/Speech evaluation are located in Chapter 7.
Section 2: Where to Get Testing
Now that we have discussed what signs you need to look for in your child to determine if he or she needs to be tested, where should you go to have the testing done and who will pay for it? Good news: your child’s school will foot the bill! The school also will administer the Psychological-Educational Evaluation, Sensory Integration and the Sensory Integration Praxis Test, and Comprehensive Language and Speech Evaluation upon request (some school systems may not due to limited resources).
When making the request you need to specifically state which test(s) you want done (preferably in writing) and the school system must administer the test you requested. They are required to contract the service and administer the test to your child at school or give you a referral to an off- site testing location. As a parent or advocate you have the legal right to request the test and that is regardless of what state you live in, according to federal law (Individuals Disabilities Education Act).
I am an advocate for submitting your request in writing (template provided in chapter 6) to the principal as well as the special education coordinator. My general rule of thumb is that you should always keep all correspondence relating to any requests concerning your child.
Once the request is made and depending on your state’s rules you may
attend a meeting with your child’s academic team to review why you are making the request. This will be your platform to discuss your concerns about your child’s academic development. If attending a meeting sounds intimidating to you, do not fear. You always have the option of inviting whomever you would like to all meetings. It can be your parent, friend, or a special education specialist/advisor. Just remember you are an advocate for your child. Do not back down and do not take no for an answer!
If your child attends a private school, he or she is still governed by federal law, however the assessment will have to be done at a state education office or at your local public school. The procedure will be the same but you will contact your state’s special education office and let them know that you want your child to be tested. Remember to be specific. Once you have placed your request in writing, the office will send you the required paperwork to complete and be followed up with a test location.
Psychologists, psychiatrists, audiologists, occupational therapists and speech therapists covered by your health insurance also can administer testing. Depending on your health insurance you may have to pay a co- pay; however, I am a strong advocate for getting a second opinion.
Remember, the school will only consider issues they have decided are academically hindering your child. For example, Asar, receives occupational therapy, mainly for writing, even though he has other issues that need to be addressed. So, I take him to an outside occupational therapist to ensure he gets all the services he needs. I also use outside
services to review the goals school officials place on his Individualized Educational Program (IEP), as most IEPs are cookie cutter and not specific to your child.
The extra money and time is worth it in the long run. You are not the expert and you don't have to be, but getting a second opinion by a specialist who speaks to you after every session enables you to become an expert where your child is concerned. Empowerment and an unbiased opinion – that is what you gain when you get a private doctor to either re-administer the test or review the test results provided by the school.