Parents' Commonly Asked Questions About NLD
by Pamela B. Tanguay
1. How do I deal with family and friends who provide “helpful” advice, which is actually thinly disguised criticism?
Our society prizes language skills, and often equates language skills with a level of maturity and ability. Due to the NLD child’s precocious language skills, friends and family members will often see what they believe to be a bright, socially-engaged child. Many are unable to see the child’s difficulties and assume that if there is a problem, it is as a result of poor parenting rather than a disability. Unfortunately these individuals are often family members which makes the situation that much more difficult. Suggestions and comments such as: you are far too protective . . . let her learn from her mistakes . . . all she needs is a good spanking . . . are all inappropriate. Trust your instincts, and do not cave in to the advice of uninformed individuals. Provide family and friends with information about NLD, and encourage them to ask you questions about your child. If they respond positively, that’s great. If they ignore or discount the material which you provide, and all attempts to educate them about NLD fail, then you should distance yourself from these individuals. They do not have you or your child’s best interest at heart. Easier said than done, but better to distance yourself before your child is placed in a dangerous situation as a result of their ignorance, or your attempts to educate them escalate to the point of a nasty situation.
2. Are there subtypes of NLD? My child has some of the characteristics of NLD, but not all of them.
There is no research evidence which indicates that there are NLD subtypes. There is one established set of criteria for the Syndrome of NLD, which was developed by Dr. Byron P. Rourke. However, there can be a significant difference between the presentation in children who have the Syndrome of NLD and those who do not have the full syndrome, but do have learning disabilities in the nonverbal domains (e.g. dyscalculia, dysgraphia, social deficits, organizational difficulties, etc.). It is important for parents to know whether their child was diagnosed with the NLD Syndrome, or with a nonverbal learning disability.
3. What is the difference between NLD and Asperger Syndrome?
There is a tremendous amount of controversy about what differentiates NLD and Asperger Syndrome (AS). The short answer seems to be that children with AS have more significant behavioral issues and a narrow area of interest which impedes their ability to learn. The AS researchers at Yale indicate that the vast majority of individuals with AS also have NLD. Dr. Rourke states that his research indicates that all individuals with AS have NLD. Unfortunately, there are many children who have been diagnosed with AS but do not meet the DSM criteria. Within this group are likely many who actually have autism, but were given a diagnosis of AS either because their symptoms were milder than what the diagnostician would consider to be autism, or in order to spare the child the label of autism. This creates confusion as to the learning style of the child, since AS and NLD children’s preferred learning modality is auditory, while autistic children generally respond better to visual teaching strategies.
An additional issue which many are unaware of is that the diagnoses of Asperger Syndrome and NLD come from two different disciplines. AS is researched and diagnosed in the field of psychology/psychiatry, and NLD is researched and diagnosed in the field of neuropsychology. AS is diagnosed through patient history, observations, and tests which deal primarily with the presentation of the disorder – how the person acts/responds in various situations. A psychologist/psychiatrist will not diagnose a patient with NLD since it is not listed in the DSM, which is the classification manual published by the American Psychiatric Association. NLD is diagnosed through patient history, and an extensive testing protocol which identifies how the individual’s brain functions due to their specific neuropsychological assets and deficits. As a result of this profile, a determination can be made as to what the individual’s strengths and weaknesses are, and as a result, how they are likely to act/respond in various situations.
4. As a parent, how can I help my child make, and keep, friends?
If you child is still young, you can create play dates with another child. It is wise to have these play dates at your own home so that you can facilitate each one. Provide considerable structure for the children, and have activities planned ahead of time so that the children do not have to figure out what to do on their own. If your young child is invited to a birthday party, you should also attend. Observe your own child at the party and facilitate his/her interaction with the other children if necessary, or explain the rules of a game that the children will play.
For the older child, also have social engagements at your home, again with activities planned ahead of time. However, for the older child, you should plan the activities together, and script how he/she should handle different eventualities. Make sure that the activities are something that the other child is interested in, and insure that he/she has a very pleasant time at your home in order to increase the chance that they will return again. Supervise the play time, but do not hover. Be close by so that you can hear what is happening, and step in when necessary.
It is best to keep social contacts to one-on-one, since NLD kids do best in these situations. If possible, avoid sleepovers, especially at another child’s home. For the NLD child, a sleepover is just an accident waiting to happen. If the child absolutely insists on a sleepover, have it in your own home, keep the number in the group very small, with a schedule and planned activities for the time that the children will be awake. Remain within hearing distance of the party so that you can step in if necessary in order to assist your child.
5. What types of activities are beneficial for NLD kids?
To improve eye-hand coordination and problem solving skills, computer games and handheld electronic toys such as Game Boy are excellent activities for NLD children. Skills with these types of activities may also prove socially beneficial, as the child’s skill will be prized by his or her peer group.
To improve gross motor skills, physical coordination, and dexterity, consider the following activities: swimming, archery, canoe/kayak, dog obedience, in-line skating, hiking (with good boots and a walking stick), art, and music. It is wise to begin with private lessons, and if the child develops a basic level of proficiency, then small group lessons may be socially beneficial. Avoid team sports, since NLD children have a great deal of difficulty with the rules of the game and the complexity of the social interaction involved. The goal is to build competence AND confidence.
Structured organizations (such as scouts, 4-H, church youth groups, etc.) are generally the safest social outlets for NLD children. However, always make sure that the facilitator is aware of your child’s strengths and weaknesses so that he/she is not left to socially fend for themselves.
6. What type of educational environment is best for my NLD child?
There is no one environment which meets the needs of all children with NLD. However, most NLD children benefit from the following:
· A small school in terms of the actual facility, student population and class size;
· A teacher and paraprofessional/aid in the classroom;
· A limited number of teachers and class changes;
· Continuity of teachers and students;
· A high level of structure, predictability, and routine;
· A caring staff, accepting students, and zero tolerance for bullying;
· Reduced visual and auditory distractions;
· Supervision and assistance for social and spatial challenges;
· A nurturing environment for the little ones, weaning to supportive, rather than independent, for the older students.
7. What educational placement options are available and appropriate for my child?
There are various educational options to consider, from the public school system (including charter and magnet schools), to private schools (both independent and parochial), and homeschooling. Although traditional public schools may be able to appropriately support the NLD child in the early to middle elementary grades, they are less able to do so in middle and high school. It is important to prioritize the child’s needs when making your placement decision, since it is unlikely that you will find a school that meets 100% of your requirements. If the child is overwhelmed by a large school and multiple teachers, then a high priority should be placed on the size of the school. If the child needs significant intervention, then a high priority should be placed on special educational strategies specific to the child’s learning style.
8. What is the difference between IDEA and 504? Are services under one better than the other?
IDEA, which stands for the Individuals with Disabilities Education Act, is a non-funded federal entitlement law. Qualifying conditions are stated within the law, and parents’ rights are specified. Although the entitlements of disabled children are federally mandated under IDEA, it is unfunded legislation, meaning that the expense rests with the school district, town, and state, often placing an undue burden at the local level. As a result, there is often friction between school administrators who are trying to control expense and parents who are trying to secure the best services for their child.
Section 504 of the American’s with Disabilities Act (ADA) is a non-discrimination law, which requires that the barriers to learning be removed. All children who meet the qualifying conditions under IDEA automatically meet the criteria for 504. However, many more children qualify for a disability under 504 than under IDEA. Many school districts only allow student accommodations and modifications under a 504 Plan. However, a student is actually entitled to all of the same services under 504 that he/she is entitled to under IDEA, and can have an IEP under both a 504 and IDEA classification.
Parents need to know that states are free to expand the benefits under a federal law, however they are not legally allowed to restrict the law to a narrower definition. It is critical to learn how the law is interpreted in your particular state in order to secure the appropriate services for your child.
9. How do I secure services for my NLD child?
In order to secure services for your child, there are two thresholds you must cross. First is the qualifying condition. Many school districts reject NLD as a valid diagnosis, however there are other definitions of disabilities which may qualify your child for services. The second threshold is determination of need. Is the child disabled enough to qualify for services?
1st threshold - Qualifying condition. If your state does not recognize NLD as a specific qualifying condition, some other options which they may recognize are:
§ Neurologically impaired or Encephalopathy (brain damage of unknown origin).
§ PDD-NOS (Pervasive Developmental Disability – Not Otherwise Specified) – this diagnosis is often made when the child has autistic-like symptomatology, but does not meet the criteria for autism or another pervasive developmental disability. It is specifically listed in the DSM.
§ LD-NOS, which is specifically listed in the DSM.
§ Developmental Coordination Disorder (DCD), which is specifically listed in the DSM.
§ Semantic Pragmatic Disorder, which is a recognized communication disorder, and would result in a communication handicapped classification.
§ Asperger Syndrome, which is specifically listed in the DSM under the category of pervasive developmental disability.
2nd threshold - Level of performance
Once the qualifying condition has been determined, the next step is to prove that the condition significantly compromises the child’s ability to learn and/or participate in all of the activities that are offered to his/her peer group. Under IDEA, each state develops criteria for determining the disparity between the child’s ability and level of performance. It can be quite difficult to meet the criteria established at this second threshold, which is why many NLD students are serviced under a 504 Plan with accommodations and modifications, but denied the full range of services that they rightly deserve. It may be necessary to hire an educational advocate or an attorney in order to secure all of the services which your child requires.
10. I have heard that NLD kids can’t do math past the fifth grade level. Is this true?
Generally NLD children are very good at rote memory activities such as math facts, especially if they are taught auditorily. Other math ability depends on the degree of the impairment, and the method of instruction which is used. Math must always be taught in a very direct and step-by-step fashion. If each step is not specifically taught, the child will not be able to learn how to do the required operation. NLD children commonly make calculation errors, often due to misalignment of columns of numbers. Long division, estimates, place values and fractions are generally particularly troublesome. Higher level math (algebra, geometry, etc.) will likely be quite difficult, and the child may need to be taught in a one-on-one manner, rather than in a classroom setting. When the learning style of the NLD child is applied, many are able to accomplish math well beyond the fifth grade level, but it will almost always be quite difficult. It will require a lot of patience, and there will likely be gaps in their learning (e.g. fractions) which should be accommodated through the use of a calculator or other aid.
11. If children with NLD are auditory learners, does this mean that they can’t learn visually?
In individuals with NLD, of the visual, tactile, and auditory senses, hearing appears to be the most preserved of the three, resulting in a preference for learning through the auditory modality. Depending on how significant the visual and tactile impairment, the individual may or may not be able to learn visually or tactilely. Visually, the deficit is generally most pronounced with complex (lots of small type or problems on a page) or fleeting (facial expressions) visual images and tasks that require visual tracking (reading and math calculations). However, the use of icons (simple visual representations) are often a very effective teaching strategy for NLD students.
12. In our home, homework time is a nightmare. Should NLD children be required to do homework?
Generally it is beneficial for the NLD child to do homework. However, this assumes that the child is being appropriately supported at school, and that any homework assignment is a review of material which has already been covered in class. If homework becomes difficult, the assignments should be modified. Ideally, the teacher should tell the parent how long the assignment is expected to take. The parent should implement the use of a timer, setting it for the recommended duration. The child completes only what he or she is able to within the time limit, and then be graded only on what was completed. Class work should be handled the same way – by grading on what the child is able to complete during the assigned time limit in class. Unfinished class work should never be assigned as additional homework.
13. How much parental homework help is too much?
It is important to remember that homework assignments and special projects are simply tools for learning. As long as a parent is helping the child to learn, no amount of help is too much. However, once the parent crosses the line into actually doing the assignment, the opportunity for learning is lost. It the child is unable to do a particular assignment, it is far better to write a note to the teacher explaining the problem, rather than do the assignment on behalf of the child. The school should always be aware of the amount of assistance which was required by the parent so that they are aware of the child’s abilities and limitations.
14. Should my child be required to take standardized tests at school? If so, should he/she have modifications such as extra time or a separate room?
It is wise to consider having your NLD child participate in all standardized testing, without accommodations. Repeated exposure to standardized testing makes the task less novel, and increases the likelihood that the student may perform well over an extended period of time and exposure (a child may be expected to do poorly in elementary school, but much better by high school). Also, it is important to remember that the benefit derived from accommodations for standardized testing (such as extended time) may mean that the child misses classroom instruction time which they desperately need.
Another very important consideration is that the results of standardized testing may be the only objective measure of whether or not your child is actually learning. Often, grades are quite subjective, and may not be an accurate measure of your child’s ability. If your child is getting good grades in school and has scored well on standardized testing as a result of accommodations, it will be difficult to secure services. However, even if your child is getting good grades, if he/she does poorly on standardized testing, the parent is in a stronger position to request help for their child.
15. My child doesn’t seem to respond when I talk with him/her. The teachers have asked me to have his/her hearing checked. How can this be, if the NLD profile indicates that these kids are auditory learners?
There seems to be a period, generally during middle elementary school, when some NLD children develop CAPD (central auditory processing disorder). This apparently lasts a relatively short period of time – one to three years – and then often seems to disappear. During this period, the use of an FM Receiver is often quite beneficial, allowing the teacher to speak directly to a student while in a regular classroom setting.
Copyright: Pamela B. Tanguay, 2003
This article is posted on NLD on the Web! with permission of the author, who retains the rights to this article.