Monday, October 1, 2012

Glass Children


A guest post by author Madonna Dries Christensen

October is Down Syndrome Awareness Month. As the grandmother of one child with DS and one with autism, awareness is second nature. These children have an older sister, so I’m also aware that siblings of children with special needs often have difficulty coping with the association.


        We all wear labels today. My oldest granddaughter’s label reads: typical child. Sixteen months older than her sister and four years older than her brother, she is accustomed to therapists coming to the house to spend time with her siblings. At age nine, and beginning to grasp that they need extra help, she’s both protective of them and resentful of the attention they receive. She once commented to me that it’s hard being the only child in the family without a disability.   
        This child makes the honor roll. She has an expanded vocabulary, is gabby, a good listener, and eager to learn. In a verse she wrote in Third Grade, she described herself as curious and smart. She’s kind and generous; given to writing notes signed with hearts and xoxo and sometimes including a dollar bill. She’s alternately sweet, sassy, confident, and insecure. She frets about change. She has a quick humor and likes playing pranks. She’s a Girl Scout, a school patrol guard; she plays chess and piano, and is taking lessons in percussion for the school band. She enjoys running, swimming, climbing trees, building things, and is an imaginative storyteller, writer, and artist. She has won awards for artwork and needlework.
My granddaughter attends a therapy group for students who have siblings with special needs. It’s an outlet, but when sensory overload brings a meltdown, she complains that no one listens to her; no one pays attention to her. Of course, we do listen; we do pay attention, but she’s forgotten that a visiting grandparent played with her all day, that the whole family applauded one of her stage shows in which she was the solo performer, or that she spent the day with her aunt and rode her horse.  
In an Internet video, Alicia Arenas talks about her 1970’s childhood as the older sister of an autistic brother and another with a terminal illness who died at age four. The child with autism was not diagnosed until age 13, so prior to that the parents had no guidance. This overwhelmed them, and frustrated Alicia.    
Arenas calls the siblings of children with special needs Glass Children (she doesn’t know who originated the term), and explains that this does not mean they’re fragile. Instead, they’re strong, reliable, independent, and often willingly shoulder the responsibility of making life easier for their parents. When someone says, “You need to be good and help Mommy,” they take that to heart. Because these children appear to be doing well, busy parents and other adult family members might look right through them—like clear glass. If asked how they’re doing, these kids will say they’re okay. Arenas warns that they are probably not okay. They are at risk.   
Search online for Arenas and watch her video. Then consider a family you know that is meeting the constant demands of someone with special needs. Think of special needs in a broad sense. The family might be dealing with a teenager who’s involved with a gang, or a live-in grandparent with dementia. Maybe a parent is away on military duty. The children in these households would benefit from individual attention. Take a child to a movie, or shopping; teach a craft or skill, help with homework, or seek his help—maybe lessons in using your new iPad. Children thrive on showing what they can do. 
        When my granddaughter requested help with a secret project, I mailed her an envelope marked private, with instructions on what she needed to do. She told her parents, “There was a letter that made me feel confident about myself. It made me feel like I could do anything.”
Don’t look through the children around you; look at them; let them know you’re listening. All children have special needs. 



Madonna Dries Christensen is the author of several books, most recently In Her Shoes: Step by Step, a memoir. Royalties are donated to the Down Syndrome Association of Northern Virginia.


                                    


 
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