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‘Navigating the Labyrinth of the Non-Mainstream Child’: Book offers insight and advice to parents raising special children

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If you have a child with a developmental delay or disorder, you have two paths to choose from. Your first choice is putting your child into the mainstream public or private school system with other children who — for the most part — are not experiencing mental or physical problems as they progress from grade to grade. The second path is to take the non-mainstream approach and allow your child to learn in an environment that is not as highly structured but will allow him to progress at his own pace.

Author Susan Hendrie-Marais, a resident of northern California, published a book in 2016 called “Navigating the Labyrinth of the Non-Mainstream Child” about the challenges she faced raising a son with several developmental problems. Hendrie-Marais says her son is now 23 and functioning well in the mainstream world in his own non-mainstream particular way, but she writes about her regret of choosing to place her son in a regular school with other teachers, parents, and students who showed little empathy for her son’s issues.

Delays vs. disorders

As a result, Hendrie-Marais has assembled together helpful information for other parents who feel overwhelmed by the task of raising “non-mainstream” children. Because she herself has experienced such an endeavor, Hendrie-Marais offers advice, insight, and a range of possibilities to parents who often feel isolated finding the right treatment for their children.

In her book’s appendices, Hendrie-Marais provides “a rough guide” of developmental milestones by age that are classified into four categories — social and emotional, language, thinking and learning, and movement and physical. Pediatricians use this guide to “assess whether a child is developmentally where they should be by age,” she writes.

Explaining the difference between a delay or a disorder, Hendrie-Marais writes, “A delay means that a child’s development is normal but slower than the norm for age … Sometimes therapy is recommended, but delays often can self-correct over time without therapy or intervention … A disorder means a child’s development is abnormal relative to the norm for age. For example, autism is a disorder … Whatever it is that is disordered may or may not improve. Therapy is almost always recommended and often medication is as well.”

Developmental testing

As soon as a family is informed of a child’s problem, Hendrie-Marais advises that they see a behavioral pediatrician who will have “an in-depth understanding of developmental issues” and guide parents towards specialists “for additional testing, which then begin to quantify what is happening.”

While such testing is expensive, public schools usually have a staff of specialists and a source of services to help your child overcome certain disabilities. If a public school cannot provide such services, then it is obligated by law to pay for the student’s private school tuition and programs.

Hendrie-Marais warns that developmental test results are “not necessarily absolute.” For example, she was told that based on her son’s low scores on test results, he would have difficulty reading and writing, which never happened. If a child is encountering certain difficulties in functioning inside and outside of the classroom, his parents should seek out specialists in the areas of concern.

Specialists and parent networking

Speech therapists (also called speech pathologists) help children with language, communication, and social skills. Physical therapists assist children with movement and fine motor skills. If your child has difficulty with coordination to do everyday tasks such as dressing or tying shoes, parents should contact an occupational therapist. If your child is suffering from psychological issues such as anxiety or obsessive-compulsive behavior, there are specialists such as pediatric and adolescent psychologists, social workers, or psychiatrists that can help.

After meeting with highly renowned specialists in their fields, Hendrie-Marais found she could not tolerate such doctors who arrogantly made parents feel “barely worth their time.” The best specialists she was able to find were people she could question and debate with about her son’s progress. She regrets not networking with parents of other non-mainstream children to get referrals for specialists or for names of stores that carry certain gluten and dairy-free snacks — foods which have been known to affect some children’s behavior.

Beware of labeling

One area Hendrie-Marais questions when working with specialists is “diagnostic labeling.” As soon as a child is given a diagnosis, he becomes part of a certain group of children. For example, a specialist who is working with a child who throws tantrums and is defiant, diagnoses his patient with oppositional defiant disorder. The specialist then might not look at the patient’s hyperactivity that accompanies attention deficit hyperactivity disorder, or the child’s frustration from a possible learning disorder. The child could also be feeling overwhelmed by an anxiety disorder or perhaps feels troubled by something in his environment.

Relax and make memories

Outside of school and therapy appointments, families must try to give themselves time to relax. Parents should communicate on how they will raise their child together in similar parenting styles. Because so much attention is devoted to helping the child, parents forget to put time aside for themselves as a couple. As a result, these parents start to feel alone and resentful of their situation and some may even split up.

At home, therapists recommend routines and schedules for non-mainstream children who often have trouble navigating their way through new situations. They stress the importance of making daily activities repetitive and familiar. Hendrie-Marais warns parents to remove as many external sources of conflict and confusion as possible, such as offering a child two choices instead of five.

Even bonding with such a child will seem non-mainstream. Hendrie-Marais had her most memorable experiences with her son when the family would go on short trips together to take a break from all of the household schedules and routines. One parent recounted to Hendrie-Marais that she felt closest to her child walking him around a concert hall when he couldn’t sit through a performance.

Ironically, many non-mainstream children are very creative and can amaze teachers with their innovative ways of thinking. At the mainstream school her son attended, he could dazzle teachers with his brilliance one day and get in trouble the next. When every evening became a Herculean task to finish homework assignments, Hendrie-Marie again regrets the pressure she put on her son to keep up with his peers. She was comforted when a psychologist once told her that the most interesting adults were always the most difficult and problematic children.

Alternative schools

The non-mainstream choice is frightening for many parents because there are so many unknown variables at play. Special-needs schools can have many students with severe behavioral issues. Progressive developmental schools can often be chaotic if certain boundaries are not put in place. And home schooling is extremely time consuming. If parents are considering forming their own school, they must be warned that such an undertaking requires consistent funding from donors.

Also available to parents are therapeutic boarding schools, which restrict privileges from students who do not abide by rules. Hendrie-Marais rightfully questions how students can improve their well-being in such highly restricted environments with rigid codes of conduct.

Instead, she favors wilderness retreats for adolescents who have become emotionally unreachable to their parents. Many of these programs involve teens leaving home for months at a time to live in the outdoors, hiking, pitching and making camp, meeting with therapists, and working in groups doing therapeutic activities.

Medication

Lastly, Hendrie-Marais discusses different types of psychological therapies and psychotropic medications children and adolescents can take for their problems. She warns, however, that medications treat symptoms and do not solve problems. She said parents should observe their child’s behavior on medications. If a drug is having an adverse effect on a child, the parent should immediately stop administering it. Hendrie-Marais is also open-minded about medications, saying that some of them have provided remarkable results for children.

Overall, Hendrie-Marais tells parents not to be discouraged by their children’s issues. As she concludes, “Nearly every time a specialist told me that my son would not be able to do something, he was not only eventually able to do it, but he also usually excelled. This is the paradox of non-mainstream children. It is both crazy making and fascinating.”

Allison Plitt lives in Queens with her daughter and is a frequent contributor to this magazine.

Updated 2:46 pm, May 17, 2017
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