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.
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.
I'd love to meet this lovely girl some time. Thank you for this thought-provoking piece. I especially loved your admonition to stop looking through children. I took that message to heart and will try to be more conscious of my demeanor when I am speaking to people, adults as well as children.
ReplyDeleteRandi, I agree. This truly was thought-provoking.
ReplyDeleteBecky: Hello! Thanks for coming by and reading. It's always great to see your smiling face in the comments!
ReplyDeleteThanks! It's always great to see yours as well in MY comments! :)
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