Prader-Willi Alliance of NY, Inc.244 5th Avenue, Suite D-110New York, NY  10001

Telephone: (800) 442-1655
Email: alliance@prader-willi.org

Chapter of PWSA (USA)

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The Special Child

by Elinor Baller

            My daughter Louise came to Florida to visit in February.  She flew alone, deposited at the gate by Kami, who manages her group home in New York, and delivered to me at the Baggage Claim area by a Jet Blue representative.  She stayed for six days — good days I would say, based on my teary goodbye, but days that transported me back to my life as mother of a less able child.  “In a way, you still have a child,” a friend of mine said when she heard me speaking to Louise.  And despite how much I think Louise has grown up in her group home surroundings, she is still a child in my Neverland.  When she is with me, she is aware of my every move, always keeping me in range.  She is my chief questioner and my constant reminder.  She is at my bedroom door at 8 a.m., waiting for me and for breakfast. 

 

           Food, of course, is crucially important to Louise, since she has Prader-Willi Syndrome, a genetic disorder that, along with delayed development, produces people who are small in stature, constantly crave food and never feel satisfied.  If their diet  is not closely controlled, they can easily balloon to over 200 pounds.  Louise knows that exercise and diet are important, so taking her laps around the villas and then on to the clubhouse for coffee is part of her daily routine when she is here.  Having ascertained when and where the next meal will be, she’s ready to accompany me anywhere — happily, willingly — the one person in my life who is just happy to be with me.

 

           While she was here I dragged her to Costco’s, to Publix, to exchange a shirt at Patchington’s.  She diligently worked on her puzzle (500 pieces in four days) while I cleaned up the house.   Of course we did some special activities — the McCarthy Wildlife Refuge — where she held a python, a tortoise, a marmot, and even a baby alligator.  The six-year-old girl in our group agreed to hold each animal, after which Louise engaged the leader with “What about me?”  The next day we toured the Flagler Museum and walked hand in hand around Mizner Park  — Louise, the never ending child in my life, Louise, the child who never criticizes me, never judges, is happy with the smallest things.  And I am a different person with her.  We can giggle; I can sing songs, feel between her fingers for that little crumpled piece of tissue she likes to keep there, and play a little hide and seek between the racks of clothing at Lord and Taylor’s.  Taking her to Applebee’s is like taking someone else to Seasons Fifty-two.

 

           I’m also aware of the changes in our relationship since Louise entered the group home. When Louise lived at home, I was the one who had to be the bad guy, always restricting her food intake.  Now, I notice that I am more lenient, letting her have the soup before her salad, letting her sample a little, and sometimes a lot, of everything at the Super Bowl party and not watching what slips from the table to her plate.  I know now that I can relax my lifelong vigil because at the end of her stay in Florida or her visit at home, she will go back to her group home with its built-in oversight and exercise program.

 

            I also know that despite the pleasure I can take in her child-like qualities and the bond we share, having a child with a disability has plenty of downsides—the perpetual questions, the perseveration, the cord that stretches but doesn’t let go.  I remember when, at the age of 28, Louise moved into her group home,  I actually felt a new lightness.  I had lived with the cord for so long that I suddenly stood taller without it.

 

            Now I am left with the normal parental dilemma — happy when she’s here, happy when she returns to her own life.  I am also learning to accept her new found independence and to forego some of my parental control.  And that’s not always easy.  It’s a simple fact that no one cares about your child the way you do — from tooth brushing, hair styling and combing, outfit choices.  And parental control loses its bite when your daughter has her own home and can choose to come or not as she wishes.

   

          Last week I called to remind Louise of the Prader-Willi Conference coming up at the end of April.  We usually travel to Albany together, attend some of the sessions and visit with the other families of Prader-Willi children.  Louise and I are both proud of how well she is doing with her work and her life at the group home.  But sometimes Louise hesitates — not so sure she wants to go, and if she declines, I have to live with that—the frustrating acceptance of her independence.  The upside is that Louise is very happy.  She has a boyfriend now who lives in her group home.  They really like and care for each other in a simple, attentive way.  And guess who’s coming to Passover dinner at my son’s house next week— Louise and Ron.  Maybe she isn’t such a child, after all.

 

(c) Elinor Baller,  February 20, 2018

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