By Wendy Cwiklinski with Addendum by Michele Karabin
[Updated, Department of Christian Service, 2015]
The Invisibly Challenged Child
The name “invisible child” is both a descriptor of and a dedication to our children, who are invisible in the sense that their disabilities, though often severe, are hidden from view. Brain disorders, though biologically based, often are not obvious physically, so the invisible child looks like any other child. In addition, children with these disorders usually have normal intelligence. In fact, many are gifted, sometimes to a high degree, and because of this they are able to develop coping skills that further hide their differences, the result being that they may either not be identified or their struggles will be misunderstood. Because it typically takes such a long time for children to be diagnosed and receive appropriate treatment, they are particularly susceptible to falling through the cracks, dropping out of school, becoming suicidal, or entering the juvenile justice system.
Unlike a child with cerebral palsy or Down syndrome, children with these physical challenges are not always visible. More and more children, for one reason or another, are being diagnosed with brain disorders such as ADHD, autism, depression, or bipolar disorder. These disorders are “visible” through the symptoms, usually manifested in the child’s behavior. It is easy to stand by and think (or say), “If only that parent would get better control of their kid”; “All that child needs is a good spanking”; or “What a bratty kid!”
“These Diagnoses Are Not Real”
Some popular psychologists with newspaper columns and talk shows just might agree with the above heading. Denial is still widespread in our society when it comes to the invisible child. But, for these families, the diagnoses are very real. These disorders are genetic and are recognized within the medical community by commitment to treatment and research. Parents don’t want their kids to have a brain disorder, any more than they want their kids to have any other disease. Unfortunately, the symptoms of these disorders often manifest themselves in what appears to be willful behavior. Rather than helping families of children with these disorders, often we exclude them from our communities by being judgmental. These families need to have spiritual support to face the sometimes overwhelming challenges that these disorders bring to their households.
“What Is It Like for These Families at Home?”
Children with mood disorders can sometimes be difficult to calm down and can rage for hours. They can be physically aggressive, as well as verbally abusive. It’s not a question of parenting. Think of a brain disorder as you would think of a stomach virus. Even the best parent can’t prevent the ill child from vomiting—and sometimes these acting-out behaviors seem like a kind of psychic “vomiting.”
Parents are usually busy shuttling the child from one appointment to another. School can be an issue, especially if the child is not stable enough to stay in regular classroom. Neighbors tend to become less than “neighborly,” and may even shun the family as “social lepers.”
“How Can I Help?”
Maintain an attitude of love, compassion, and acceptance for the family.
The stigma of having a child diagnosed with one of these disorders can be so hard to live with that some parents do not disclose their child’s diagnosis, even to close friends. If they do disclose this to you, honor their trust by keeping it to yourself—unless you have their permission to share.
Offer to help in some way, even if you are turned down. Just the act of offering shows that you are supportive.
Help with the kids. If the family has more than one child, then be a mentor or “big brother/big sister” to the affected child’s siblings. When one child in the family is ill, the norm for family dynamics is to focus more on the child who is ill. Extra attention is usually helpful for the other siblings. Take the kids for a while so the parents can go out for a cup of coffee alone.
Help out in church. Approach the parent during a quiet time (fellowship hour, perhaps?) and offer to have the child or a sibling stay with you during church.
If the child is hospitalized, offer the family the same support you would offer if, for instance, the child was hospitalized with a heart problem.
Make a meal for the family. Often the parents are exhausted from dealing with the day- to-day issues that come with having a child with a mood disorder. Something as small as a meal can be a welcome contribution.
Involve the child with other children at church as much as possible. If behavior is an issue, the child needs to be with other children and learn appropriate behavior. If the child is in Church School, the teachers should be made aware of ways to include the child in as many activities as possible without highlighting any disabilities.
Focus on the child’s positive behaviors. Sometimes the most important thing to realize is that they are in church. Just getting them there can be quite an accomplishment. Realize that children can learn even when they are not perfectly still.
Matushka Wendy Cwiklinski is the parent of five children—four of whom have been diagnosed with mood disorders and/or autism. She works with local and online communities that support parents of children with brain disorders, primarily in the U.S. and Canada. She has a Diploma of Religious Education from St. Vladimir’s Orthodox Seminary, Crestwood, NY, and an M.A. in Religious Education at Fordham University: Embracing All God’s Children: Orthodox Theology Concerning Disability and Its Implications for Ministry with Special Needs Youth in the Orthodox Church. The full paper can be found online: fordham.academia.edu/WendyCwiklinski
Want to Learn More?
Here are some informative websites:
Healthline provides a very comprehensive overview of bipolar disorder as a critical starting point for individuals and/or their loved ones.
Article: “Church and the Child with special Needs: Worshipping with a Special Needs Child”
Article: “Special Needs: How One Church Reached Out to These Struggling Families”
(Both are excellent articles with practical suggestions for parents and for churches—Ed.)
Child and Adolescent Bipolar Foundation
Children and Adults with Attention Deficit Hyperactivity Disorder
OASIS—Online Asperger syndrome Information and Support (High Functioning Autism)
National Autism Society
Learning Disabilities Association of America
The Invisible Child Organization
National Alliance for the Mentally Ill
Additional Observations and Resources for Parents of Children with Hidden Disabilities
by Michele Karabin
Families living with children who have hidden disabilities could greatly benefit by utilizing state disability resources, special education, and community nonprofit organizations. It is very important for these children to understand their own disability and that they are not like other children. Unfortunately these “invisible children” and their parents are often in denial. Many such children act like they don’t care about school, rather than let other people know they are having difficulty learning. This denial leaves them susceptible to repetitive failures… in work, in school, and in developing relationships.
Job coaches, employment counselors, and school counselors who specialize in hidden disabilities can help them succeed by offering on-the-job and in-school accommodations (e.g. longer time for tests; auditory testing, etc.). Many students reject these valuable resources for fear of being stigmatized and looked at differently by their peers. Many of the youth I’ve counseled remembered rejecting such services in high school. They returned on their own afterward, seeking those same services after repetitive failures due to their hidden disability.
It is important for parents of youth with hidden disabilities, or those who suspect their child of having this kind of disability, to contact the Special Education Department in the child’s school, and then make sure that the child is tested. Being “labeled” will open doors for the child to get the special assistance that he or she needs. Once these children reach high school, there are many transitional services offered that prepare students for post-secondary education (if appropriate) and/or vocational services. The following is the Fairfax County, Virginia, Public School’s statement addressing this issue:
Fairfax County Public Schools uphold the principles of the Individuals with Disabilities Education Act (IDEA) as they support the rights of students with disabilities to have decisions regarding their individual instructional program made through the collaboration of parents who know their child best and professional educators who have knowledge of instructional practices and experience in guiding students with disabilities to become productive citizens.
In my experience, many people are not clear on exactly what “hidden disability” means. The following is a list of what the term may encompass:
Deaf and hard of hearing
Mild mental developmental disability
Other health impairments e.g. osteogenesis imperfecta, otherwise known as fragile bone disease, carpal tunnel syndrome
Reading this list, which is not exhaustive, the reader can see that it covers a wide range of individuals who require special assistance from community resources.
Northern Virginia has abundant resources for individuals with disabilities. A recent addition to these services are SkillSource Centers. These centers work on a one-stop service model that brings together state services such as the Department of Rehabilitative Services, education, nonprofit efforts, social services and grant programs. This one-stop service is a fine example of community partnerships. Instead of each community service working independently of others, they are interconnected. This makes them more efficient, enabling them to recognize and discuss what works, but most importantly, to correct what does not. Their website is: www.myskillsource.org/home/index.asp.
There are also many nonprofit agencies that focus on specific hidden disabilities. To find information on services within your state, contact your Department of Rehabilitative Services. They would be able to link you to services similar to those I have described above. The website for Virginia is: www.vadrs.org. Another link to every state’s resources is: www.nichcy.org (National Dissemination Center for Children with Disabilities)
Michele L. Karabin is a member of St. Luke Orthodox Church, McLean, VA, and currently is an Employment and Transition Representative with Fairfax County Public Schools in Virginia. She formerly was a State Rehabilitation Counselor, Fairfax County Transition representative and manager of a nonprofit initiative titled “YouthSource,” a grant specifically funded to assist youth with hidden disabilities in finding employment. Michele also developed a Leadership Academy that matched individuals having hidden disabilities with non-disabled youth to plan and implement an academy that focuses on job development and work readiness.