Changing relationships within the
family
May 2006
by Rita Rubin
Mother of Sue Rubin
 WASHINGTON
(CNN) -- Sue's relationships to me, my husband Bob, and our son Gary
-- two years her senior -- were abnormal from birth. Immediately
after birth, Sue was transferred to Los Angeles so a pediatric
cardiologist could monitor a murmur. It turned out to be nothing,
but I overheard a nurse saying, "Something is wrong with that Rubin
baby. She just doesn't look right." How right she was.
As an infant, Sue didn't make eye
contact or respond to us. When she cried, she screamed for hours.
Nothing would console her -- not walking, rocking, nursing, singing
-- nothing. When she got older, she never held on to us with arms or
legs; it was like holding a sack of potatoes. All infants require a
lot of work, but in exchange a parent gets some response. With Sue
it was one way. We gave and she took, giving nothing in return.
We knew something was very wrong with
her. She fell further and further behind. Her pediatrician finally
acknowledged her delay when she was 9 months old, but didn't know
the cause. He rejected my diagnosis of autism.
Sue's only method of communication
was crying. After she finally started walking at 36 months, she
would take my hand and put in on whatever she wanted. Still, she was
not responding to us. We were just there to serve her and she didn't
distinguish between us as parents and any strangers who might give
her what she wanted.
Sue was not a playmate for Gary. They
never attended the same school throughout their public school
careers. She never interacted with the other children in her weekly
play groups.
The next 13 years of Sue's life
continued in the same vein. We were caregivers for Sue. We never
told Gary to watch her, but he realized as soon as Sue could walk
that she had to be continuously monitored. He could never leave toys
around without her destroying them. She had no concept of danger so
we had a complicated system of locks and no one ever forgot to lock
up. Despite horrendous behaviors such as head banging, biting and
screaming, we lived a "normal" life: camping, inviting friends to
dinner, etc. We included Sue in everything and just lived with her
behaviors and frequent illnesses.
An enormous change occurred when Sue
began typing at 13. After a few weeks she could answer my questions.
Three months later, she actually initiated communication,
verbalizing "work on computer" and typing "telephone Gary" when he
had gone out with friends. She began to tell us what she wanted to
do and with whom, what was bothering her when she was sick and what
she thought about all sorts of things. She still needed watching and
was still very aggressive and self-abusive, but she became a
contributing member of the household. Her receptive language went
from nearly nonexistent to almost normal. Gary's relationship with
her changed. He became more of a sibling than another parent, and
could spar with her intellectually. Instead of her always being an
embarrassment, there was a nugget of respect now.
Sue and I became extremely close
because we spent so much time typing together Ð over three hours
every school night and one weekend day -- doing her high school
homework. While doing her homework, she would often slip in personal
communications, starting a sentence with, "ask me aboutÉ," to
introduce a subject. Sue now participated in family discussions and
decisions and truly became an individual with opinions on every
topic imaginable. She also gained Bob's respect. He often was her
facilitator for math and proudly pronounced that she was better at
math than Gary. While doing homework together, he spent more time
with her and got to know the "new Sue."
Now that Sue is in supported living,
our relationship has again changed. She has her own life and her
friends, but is not as distant from us as a nondisabled adult child
might be. She spends Friday night and Saturday with us, and still
requires help with grooming, dressing, etc. However, our
relationship no longer is caregiver/care receiver. We spend a lot of
time just "talking" like any mother and daughter.
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