A Handful of Resources to Help Us Better Care for Children with Invisible Disabilities

About a month ago, I came across an offer for a small book about children living with mood disorders. Since we at the Antiochian Orthodox Department of Christian Education are always looking for resources for families and teachers that we can then share with you, I requested a copy. My intent was to read the book and offer here a few gleanings from it, highlighting it as a resource. As I inquired about the availability of the book (it was published in 2003), I learned that there are not many hard copies left. However, Matushka Wendy Cwiklinski, who sent the book to me, has so many other resources up her sleeve that this journey has ended up being not so much about the book itself as about helping us to become more aware of invisible disabilities (including those that the book addresses) and offering resources that can help us to best care for (and about) those living with such disabilities.

The little book that started all of this is called “The Storm In My Brain: Kids and Mood Disorders (Bipolar Disorder and Depression)”. It was written by Martha Hellendar, one of the founders of the Child & Adolescent Bipolar Foundation. It was published by CABF and Depression and Bipolar Support Alliance. It introduces mood disorders in child-friendly terminology, explains how it may feel to experience the disorder, recommends ideas of what to do when you’re feeling that way, and offers reassurance that the disorder does not make the person experiencing it a bad person. In addition to this helpful information for children, the book contains a page of tips for parents, and another for teachers. Anyone living or working with children with mood disorders will benefit from reading this little book. You will find a link to the pdf of the book below.  But there are many invisible disabilities besides mood disorders. We will share a few resources related to those, below, as well.

Perhaps you do not know a child with a mood disorder or any other invisible disability, and this is not part of your personal experience. Believe it or not, these resources still apply to you! Why? Well, chances are that you DO know a child (or adult) struggling with an invisible disability; they are just working very hard to keep it invisible, and succeeding – at least keeping it invisible to you. This means they are carrying this cross and struggling this struggle, alone. In order to better understand and help, we encourage you to familiarize yourself with these disabilities and the resources available to help those living with them. And why should you do that? St. Paul, in his letter to the Corinthians, wrote, “the members should have the same care for one another. And if one member suffers, all the members suffer with it; or if one member is honored, all the members rejoice with it. Now you are the body of Christ, and members individually.” (1 Cor. 12: 25-27 NKJV) The statistics are such that we can safely say that all of us have fellow parishioners who are part of our Body (the Church), living with an invisible disability as part of their cross, their struggle. If we take the time to learn a little about what they are experiencing, we can more easily pray for them; more effectively care for them; and more joyfully welcome these brothers and sisters. In that sort of atmosphere, these precious ones will be better able to contribute their valuable gifts to the Body, and, together, we will all be blessed!

While “The Storm in my Brain” is not readily available as a hard copy, you can find it online here: http://www.dbsalliance.org/pdfs/storm.pdf

Note: Since the book was published, The Child & Adolescent Bipolar Foundation has joined forces with the Depression and Bipolar Support Alliance, whose mission statement reads, “DBSA provides hope, help, support, and education to improve the lives of people who have mood disorders.” Find them on the web at www.DBSAlliance.org.
Here are some of Matushka Wendy’s writings and other links that can be helpful as we meet, love, and care for others with invisible disabilities. What resources are you aware of, which the community would benefit from knowing about? Please share them!

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Matushka Wendy started a Facebook group called “Koinonia for Exceptional Orthodox Families”, which is described as “a place for Orthodox parents of Exceptional Children to find support from other parents – sharing ways to help keep our children(and us) on the Spiritual Journey of Orthodox Christianity.” It is a private group, so if you would like to join, you’ll need to find it on Facebook, request to join, and then await approval. This group is an excellent resource for parents and teachers. It is also a place where families with exceptional children can safely ask fellow Orthodox Christians for help, ideas, and prayers.

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This document by Matushka Wendy Cwiklinski encourages us to embrace all of God’s children (including those with special needs). It offers simple definitions for a number of “invisible” disabilities which, just like any other illness (although these are not contagious), are very real challenges for children and their families alike. It is a useful place for parents and teachers to begin to understand the challenges that some children face. Especially useful to anyone not living with an invisible disability are the “How Can I Help?” and “Other Suggestions for Inclusion” sections.  https://www.academia.edu/9255990/Children_of_God

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How can we be family, the Body, to a child (and his/her family) who is living with an invisible disability? “These families need to have spiritual support to face the sometimes overwhelming challenges that these disorders bring to their households… Offer to help in some way, even if you are turned down. Just the act of offering shows that you are supportive…” Read more of what Matushka Wendy Cwiklinski has to say on the subject in her article at the top of this page:

https://oca.org/parish-ministry/familylife/church-and-the-child-with-invisible-disabilities

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“Children with special needs come to church with two strikes against them: (1) they are a child and (2) their particular challenge may not have visible signs like crutches or a wheelchair would, leading those around them to make judgments and even ask the family to leave because they are ‘disturbing the worship of others.’” Read what our Orthodox theology has to say about children with special needs in Matushka Wendy Cwiklinski’s graduate school research paper (which is very informational, but not so academic as to be unreadable), found here: http://www.academia.edu/7399622/Embracing_All_God_s_Children_Orthodox_Theology_Concerning_Disability_and_Its_Implications_for_Ministry_with_Special_Needs_Youth_in_the_Orthodox_Church
(Incidentally, she completed all of her coursework 30 years before she wrote this paper: and in the meantime, God granted her and her husband children with some invisible disabilities which greatly enhanced her research!)

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“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:
Autism
Developmental delay
Emotional disability
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
Speech/language impairment
Brain injury
Visual impairment
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.” Read about how people with hidden disabilities can benefit from community support and assistance in the article “Additional Observations and Resources for Parents of Children with Hidden Disabilities”,
by Michele Karabin, found at the bottom of this page: https://oca.org/parish-ministry/familylife/church-and-the-child-with-invisible-disabilities

(Also, just before that article, in the middle of the page there is a list and links to a variety of websites that can be helpful to someone wishing to learn more about invisible disabilities.)

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Find a variety of links to helpful sites related to people with exceptional needs here: https://www.goarch.org/documents/32058/2618758/specialneedsresources.pdf/77f65280-5a12-4e7a-b854-7bbf25ea71a0

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Children living with bipolar disorder, as well as their families and teachers, will find help, support, and information here http://www.bpchildren.com/. The presentation on the home page offers a plethora of information to anyone living with or working with a child experiencing BP, and includes anecdotes from a child living with the disorder. It is well worth the 22-minute investment.
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