Mutual Influence- Sisters as Communication Partners

Amy Parker

12/26/2016 9:47 PM

This week, I've been reflecting again on my own journey as a sibling of someone with multiple disabilities. I can truly say that M has been one of the most influential people in my life and I have been deeply blessed to have M as my older sister.

M was born in the Spring of 1970 and was among the first children with multiple disabilities to be allowed to attend public school in the United States. My sister was born with lovely brown eyes, auburn hair, the firstborn child to our parents, who were working as a minister and educator. Right away, our mother knew that M was struggling because of the whimpering sounds she was making when she was born. Later, when M was having recurrent seizures and wasn't feeding properly, our parents knew that M was born with special challenges; they were also young, idealistic and proud of their little daughter. In many ways, M being born first was fortunate because our parents were devoted to her, reading to her and singing to her with every expectation that she would learn and thrive. In those days, little was known about cortical visual impairment, but my mother knew that M responded consistently to the color red and began choosing red clothing, red toys, red bowls, saying that it was M's favorite color. When she was a year old, M was imitating speech sounds but aside from our parents, few could understand the few words that she spoke due to M's cerebral palsy. Phenobarbital was one of the few drugs in existence that was used to prevent seizures, and though our parents were leery of administering medicine to their little girl, her seizures were frequent and intense, leaving them exhausted. Later when M began going to school, more was discovered about the various ways her life would be different because of disabilities; but, like all children, M's experience with her family was her first opportunity to be nurtured and to believe in herself. Her parents knew she was learning. She loved water and they took her to the ocean, holding her next to them as the surf pushed them towards the shore. She loved people, her dad most of all, turning towards the people who spoke to her with a smile.

When I came along in the Winter of 1972, M was my first playmate, roommate, and friend. Mom shared that M couldn't say my name but identified me with a consistent use of her term: "Eye-ite", which is still a moniker used by immediate family members for me today. I have often wondered what names, gestures or identifiers individuals with complex communication needs have for their siblings, for they are surely present, even if they aren't widely recognized.

For mom, having a typically developing child after M, made M's delays more evident, because I was sitting up, babbling, crawling and cruising next to M. Also mom reports having to watch what she was saying more around me as I could more readily imitate her than M. Recently my aunt sent a copy of an amusing letter that mom, a minister's wife, sent to her mother. At the time, M was barely 4 and I was 2 years old. For me, this excerpt highlights the influence of siblings, for good and ill, on each other.

May 10th, 1974

"Mother, thank you for your encouragement about mothering. My Amy had heard me say an 'ugly word' one day and she hasn't forgotten it. Its gotten so much negative attention that she says it often. When M hears Amy say: "oh damn it!", she just laughs and laughs. And much to our dismay, M is trying to say it too. (Bite off my tongue!). Maybe it's best to ignore it and it will die a 'natural death'. I heard her saying it Wednesday night at church as she was coming off of the pulpit area. (Poor J- (our dad)-- cursing in his own home!)"

When my aunt found and shared this letter, it was timely because I had been thinking of the mutually influential roles that siblings with and without disabilities have upon each others lives. As communication partners in early and natural routines, siblings often motivate and stimulate conversations as partners in ways unanticipated by adult caregivers. Incorporating humor, simple games and supporting siblings as communication partners are approaches that more family members, practitioners and researchers are recognizing for encouraging communication development for people with complex communication challenges. In most cases, the benefit is bi-directional, as it most certainly was in my case. M's life, her resilience, her generosity, her spirituality, inspire and encourage me today, as a teacher, researcher, but primarily as a sister.

I look forward to your sharing insights from your work or life experiences as a sibling or family member in our virtual community of practice.

** M has given permission to share this story. We have long, somewhat unstructured conversations, via phone, with amplification. M has a Facebook account, which she uses with support from care staff.

Early sounds/vocalizations (not speech),Speech,Social,Expresses interest in other people,Educator,Parent/Family Member,Researcher,sibling

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