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Rita Rubin gives her daughter Sue a kiss on the head. Before Sue learned to communicate, her autism dominated their family life.  

Changing relationships within the family

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 – 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 about…," 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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