Church and the Child with Invisible Disabilities
By Wendy Cwiklinski
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. http://www.invisiblechild.org/About.htm
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 is a candidate at Fordham University for an M.A. in Religious Education.
This article is from The Resource Handbook for Ministry www.oca.org.