Stress can be monumental for special needs families


Parenting is one of the most intense periods of a lifetime and one can never be prepared for all the situations and circumstances that arise. For most parents, their children’s developmental milestones pass smoothly. For others this is not the case. Each year, the number of children diagnosed with a special need continues to skyrocket and the reasons remain a mystery.

Many thousands have been tested and found to have an attention deficit, learning disability, or bipolar disorder. One in 91 children will be diagnosed on the autistic spectrum, up from 1 in 150 just a few short years ago. Conditions overlap and may result in a parent needing more than one method of support not only for the child, but for the family as well. The stress facing families having a child with special needs is monumental and in the process some relationships falter.

Why are so many more children diagnosed with a special need? It may simply be that the diagnostic techniques are more sophisticated; however, it is not the why that is as important as how families cope and discern which resources are helpful and which are merely scams promising a quick fix at a very high cost. When people are under stress they often may not think rationally and this opens the door for those with dubious credentials and grandiose promises.

Learning disabilities make up 80 percent of the student population receiving special services. These services may be paid for through local school taxes and, when necessary, supplemented by the federal government. Students in their home schools are provided with small group tutoring, special instruction, adaptive technologies, and many other accommodations. Outside of school, many parents supplement this instruction because they believe it is not enough, or significant progress has been slow, or to enhance what is already in place. Along with many excellent and reliable learning specialists exists a plethora of charlatans promising easy answers.

Parents need to carefully research programs and should be skeptical about claims before plunking down thousands of dollars. My own daughter is dyslexic. Before finding a wonderful tutor specifically trained in multi-sensory techniques, we signed up for an unscientifically documented yearlong program in Vision Therapy. The doctors involved insisted that significant progress would be made over the year. Children of all ages had the therapy in one large room where together they all looked at the same different colored slides. They promised the treatment would improve her learning, going so far as to say their technique was something akin to healing dyslexia. Of course, one year later, I had a large debt to pay back and my daughter had years of tutoring in and out of school ahead of her.

This year the United Kingdom’s College of Optometrists evaluated 10 types of programs that claimed to improve vision problems. These programs included Vision Therapy for dyslexia and other academic/behavioral problems. It was concluded that most claims were not backed by evidence and could not be recommended. (http://www.quackwatch.org/01QuackeryRelatedTopics/eyequack.html )

When a child is experiencing learning difficulties, it is hard not to fall prey to sharks. One dubious and expensive promise to cure autism is by detoxification with intravenous chelation therapy. The costs for such treatment can amount to almost $50,000 and was held at a series of so-called CARE Clinics. On July 15, 2009 in Austin, Texas, a branch of the CARE clinics was raided by the FBI and the IRS and was closed down. Hopefully, those desperate families who were sucked in with false promises will now turn to approved and well-documented methods such as authentic Applied Behavioral Analysis (ABA) programs. Buyers beware!

Fortunately, there are ways of checking the efficacy of practitioners and programs. Autism-watch.org has posted substantial information critiquing/debunking procedures that make elaborate claims of quick fixes for conditions that require consistent long-term remediation. “LD Online” has long provided accurate information and a forum for parents to solicit creditable information and share with each other. Other sources of reliable information can be found by speaking with specialists and advocacy organizations. “Resources for Children with Special Needs, Inc.” is a singularly excellent source of services and information for children with disabilities and other special needs. It behooves parents, caregivers, and professionals to seek out the support of this well-established organization.

Doing advance research with such integral organizations as LD Online and Resources for Children with Special Needs can alleviate years of heartbreak by falling into the quick-fix trap laid by charlatans. (http://www.ldonline.org/) and (http://www.resourcesnycdatabase.org/)

The good news is that with the right support, children make incredible gains and find a way to excel on their own terms. Many years ago, I had the privilege of working with a young man who had spent his entire elementary and secondary education in schools for children with emotional problems and learning disabilities. His exact diagnosis was difficult to make and today he might be classified on the autistic spectrum. In the second grade his parents were told by his school to institutionalize him because they said he could not learn. By finding the right schools and hiring tutors to help with his specific needs, he made slow and steady progress. We met when he was in the 11th grade. This young man dreamed of becoming a lawyer like his father and brother. It was a formidable task, and with few available resources, I taped SAT tests so he, as an auditory learner could listen to the text as well as read it. We went over editorial after editorial and short story after short story to find deeper meanings, a task that is near to impossible for someone on the Autistic spectrum - one who has difficulty finding nuances and foreshadowing in literature. When it came time for college, he was accepted to Pace University.

At Pace, he was ready to advocate for himself and spoke to individual professors about his disability. At graduation, he received commendation from the president of the university and literally opened the eyes of many to civil rights for the disabled. He took the entrance test for law school multiple times, was accepted, and now practices out west. His disability has not gone away. It is still difficult for him to relate and he misses cues. However, how brave of him to have pursued this life!

Many others meet the same kind of success. A severely dyslexic young man who could not read until the sixth grade began to successfully decode the written word with multi-sensory tutoring. Eventually, he entered college where he thrived in the arts as a photographer, became a Fulbright scholar and is now a university professor. Another twice-exceptional young lady (both dyslexic and gifted) now attends the outstanding Connecticut College. Then there is the young man with neurological damage and severe seizure disorders, whose amazing parents supported him all along the way. After making little if any progress in elementary school, they found a perfect fit at a boarding school. He is now attending a special college program. Bravo to all.

The secret to each success and of putting children on the right track is by carefully investigating resources, finding the right fit, and not giving in to what seems a panacea or quick fix. Raising children is never an easy task, and is compounded with special circumstances. It is sad to know how many charlatans are out there ready to take advantage of those with special needs. Especially when they are desperate, parents need advocates and informed personnel to intervene and pave the way, providing direction for what lies ahead. Patience and dogged persistence are not easy qualities to master, however, they are essential in helping children succeed and families stay glued together.