Carly’s Voice by Arthur Fleischmann Page A

bring Carly over to join them. Their neighbor, Kathy, had a daughter who also attended
     the preschool, and was another fixture of these chaotic play groups. The mothers all
     got along well and it created a welcome community for Tammy, who spent so much of
     her time pulled into the vortex of Carly’s doctors’ appointments. But one morning,
     nearly a year after this ritual began, we were reminded that Carly was seen more as
     a visitor than as a member of the community. Kathy was planning a birthday party for
     her daughter. The invitation arrived addressed to Taryn. Not Carly and Taryn, just Taryn. Who invites just one twin to a party? At first Tammy tried to
     rationalize that maybe it was a space thing. But given the size of the family’s home
     and the fact that it was to be an outdoor party, she quickly faced the truth.
    The family’s niece had been living with them while she finished a college course and
     often babysat for Carly; we were sure they were keenly aware of the challenges we
     lived with. A line was being drawn, one we would see over and over in the years to
     come. Our “normal” four-year-old would be included, and our disabled four-year-old
     would not. This little piggy gets roast beef, and this little piggy gets none. Uncharacteristically,
     Tammy bit her lip and sent Taryn to the party.
    Slights were not uncommon. Sometime later that summer, another mutual friend of Lauren’s
     and Tammy’s was planning a party for her daughter. The Weavers lived several streets away and Mari’s sister worked as a nanny
     for their children. In fact, Mari would often walk Carly and Taryn over in their strollers
     so the girls could play together. When the invitation for their daughter’s party arrived,
     again without Carly’s name on it, it stung like a hard slapon a cold cheek. Tammy, not prone to tears, phoned Lauren and sobbed.
    Ten minutes after Tammy got off the phone with Lauren, the mother phoned to apologize
     and include Carly. Lauren had clearly set her straight. In the end, Carly attended
     (with help from Mari), and she did great. I generally noticed that the kids were more
     accepting of Carly’s uniqueness than the parents.
    Had Carly and Taryn not been twins, the double standard of their treatment by friends
     and members of our community would have been less obvious. But as it was, we had a
     constant reminder of the normal childhood Carly was missing out on. We were forever
     attempting to integrate Carly into Taryn’s world; the one with mainstream schools
     and activities, friends and parties, dance, swimming and art classes. Carly’s world
     was one of doctors and therapists. That was not a place for Taryn.
    So when it came time to invite Taryn’s school friends to her birthday parties (wasn’t
     it their birthday parties?), were we to put Carly’s name on the invitation? We decided that
     the only way for people to see the girls as equals was to treat them as such. While
     they may not share a social network, they did share a birthday. They both deserved
     the same respect. It worked in some cases; thoughtful moms sent a card and gift to
     a girl they’d never met just because she was Taryn’s sister. Others, clueless of the
     hurt they would cause, chose to ignore Carly’s existence.
    We couldn’t tell whether Carly felt the strangling loneliness that came from being
     left out. With her lack of telltale emotions, it was easy to assume she didn’t know
     the difference between being included and not. There was some relief in the delusion
     that she didn’t understand the sights and sounds swirling around her. But Tammy and
     I always felt as if we were being shunned by a clique. Getting Carly to blend in and
     be accepted would be impossible. Winning a popularity contest was never the goal;
     merely having a friend wouldbe a relief. Carly’s being shunned was a painful reminder of our child’s difference.
     If she was not included in a five-year-old’s birthday party,