Anna Changed Us All: Having a Sister with Down Syndrome

by Sami Winchester

When a friend posted that siblings could share their stories, I felt as though years of mountains fell off of my shoulders. I am a writer and have written fiction for many years. I often avoid writing about anything real as some things feel better left unsaid. Well, here goes nothing.

I am the big sister of a grown adult woman. She has Down syndrome and various mental health issues. Yes, she does not only have Down syndrome; she is a very special girl indeed.

Let’s start from the beginning. Please do not take offense from anything I say, as growing up with a sibling like mine can be really hard. I understand that everyone’s journey is different. This is mine. Someday I would like to record my sister Anna’s thoughts on this, but I will begin with this perspective. Bear with me, as I push the cobwebs off.

Anna’s Entrance to Our Family

I was eight years old and had a brother, Dean, two years my elder. I had a fun childhood and Dean and I were very adventurous. Back in the late 1970s, you could run around like you owned the world as long as you came back for dinner. My parents loved each other and were very loving toward us. We didn’t have much, but we had each other. My mom clipped coupons and convinced me that my brother’s hand-me-down clothes looked great on me. I couldn’t ask for a better start.

When my mom told us she was pregnant, I was so excited, especially when I found out that it was going to be a little girl, like me! As much of a tomboy as I was, I looked forward to braiding Anna’s hair and having tea parties. I planned it out so much that when she came home from the hospital, I couldn’t wait to tell her all about her family.

Well, when Anna came home, everything changed. People talked in whispers; strangers came to the house with odd devices to help Anna sit up properly. Mom saved every baby object from when Dean and I were little, so why did Anna need these contraptions?

As Anna got older, it was clear that she was different from Dean and I somehow. Her face looked like other children that I had seen at the many playgroups that my mom dragged us to.

Handling Tough Emotions as a Sibling

I knew Anna was different, but as I matured, I began to realize the complexity of how very special she was. I was also dealing with my own selfishness. When I looked at Anna, I felt robbed. I had a sister, but she did not keep my secrets or take joy in my stories about cute boys. My mom was engrossed in assisting her to stop her “W” sitting and other poses that were not good for her body that she favored. I wanted a “normal” sister and a family that was not so cold.

My teenage years were the worst because I did not feel like I had parents. As the years passed, my mom and dad stopped talking to each other. They stopped laughing and joking and spending nights out at the pool together when the kids were in bed. Things began falling apart. My parents all but divorced. My dad worked so much overtime that we never saw him. He needed to work to avoid what was happening at home.

My parents were too busy to really care for my brother and me. Dean got caught getting into some trouble and ended up moving out when he was 16. It was awful. I missed him terribly, but saw him around town. He was the only one that understood how unraveled our family was. I was younger, so I was still forced to attend the countless disability functions for children and their families. When I was about 15 I had had enough. I sat outside in the car in the parking lot and refused to come inside to a Christmas gathering.

As I grew older, I drifted so far away. I got into a LOT of trouble. Most of the trouble my parents did not know about because I didn’t get caught. I did my own thing away from home every day to escape what was going on around me. Everything was all about Anna, all of the time. My mom didn’t notice us anymore unless we did something unfavorable.

I think things may have been different for my brother and me if we were younger when Anna was born, or if my dad was there to help. I know now that he had a lot of great ideas and he is also incredibly intelligent. I know my dad could’ve helped me with my issues as a teen had he been present. But the past is the past. I can hate or I can love.

I know this is negative, but the beginnings were difficult for us all, as you can see.

Looking back, I realize my mom was doing the best that she could and jumped on support for Anna whenever she heard about something new. She pondered every piece of advice and got Anna involved in everything under the sun. She wanted to give her the best life possible. Anna enjoyed swimming, horseback riding, and countless other activities. I have never seen anyone try so hard to help a child.

Psychiatric Complications

One weekend Anna had a breakdown. I mean she broke; she had an actual psychotic break. Soon after, Anna was diagnosed with Bipolar disorder and is somewhere on the Autism spectrum. After being a special education teacher for nearly twenty years, I clearly see how the doctors missed her other mental health needs. Before her psychotic break, the Autism was there all along, but I was too young to understand and we always attributed the odd and trying behavior to Down syndrome. Having gone to many functions with other kids, we knew that she was different than the other kids with Down syndrome, but we had no idea it was this serious.

When Anna became an adult, my parents found a place where she could stay for a weekend, a fun place for other people with disabilities so that their parents may get a reprieve. This was a godsend. My parents started talking again and would occasionally utilize this wonderful service, perhaps two weekends a year.

Even before this incident, Anna had problems as a teen. My mom got a phone call a few times a week because Anna was too disruptive in school. She had a one-to-one aide through most of her school career. When she started her period, she decided to test the aide’s patience on numerous occasions. She’d throw her sanitary napkins around the bathroom and make loud noises in the classroom to get a reaction from the teacher and students. She went from a life skills class to an inclusion setting at one point, but was equally disruptive in both. Despite her behavior, she functioned okay until her break as a young adult (around the age when most psychotic breaks occur). Until then, she still participated in the Special Olympics, swimming, and horseback riding. After that, she did nothing for a very long time.

Soon, she was going to see psychiatrists and was trying lots of meds until something worked. After her break, she wasn’t the same. She did strange things like try to stay out in the driveway all night in the cold, wander away from home constantly, and many, many, many other things that none of us ever expected. She began to need 24-hour care. My parents have always been opposed to medications, but Anna on meds was a necessity. She was not exhibiting safe behaviors and was out of control.

It was as if the universe said: “Oh, you’re getting a handle on this, let me throw you a curve ball that you may not recover from!”

A Family of Survivors

Let’s hit that fast forward button to today: my parents are together, happier than I’ve seen them since Anna was born. It took thirty plus years, but we’ve come full circle. We’ve all loved each other, hated each other, and loved each other again.

Anna is in her mid-thirties and lives at home. My parents have no desire to have her live in a group home because they have heard awful stories of abuse. I know they are not all true. Please don’t take that the wrong way, but this is one family’s opinion. Plus, I think they finally all enjoy each other’s company. My parents are at the age where they have slowed down and I think they enjoy their life for the most part. Anna has three personal care attendants who pick her up for outings. Why does she need three? Because even part-time with Anna is exhausting.

I have to say that Anna is now one of my best friends. She is one of the few people who laughs at my dry humor, and she often asks for me, so I know she enjoys my company as well. I am pleased with my relationship with Anna. I do love her dearly and I now can’t imagine life without her. Her smile is contagious and she can read people better than a magician.

Today, you may hear the echolalic speech when she is stressed or tired and she gets stuck in an inward loop, but most times, she seems to be with us emotionally. Anna enjoys doing crafts, getting her hair and nails done, and going on outings in the community. She seems pretty comfortable at this juncture in her life. She calls the people that she likes to spend time with “her people.” I appreciate this phrase, as it puts us all in the same human category, not separated by any differences. She and I have learned a lot about ourselves over this long journey.

I also learned that I love my parents dearly. I had a tremendously hard time forgiving my father for disappearing into his work and other activities to avoid us. To this day, I don’t know how strong I would be if I was a young parent with such a big responsibility. I had a hard time forgiving my mother as the world revolved solely around Anna for so many years. She did try to include us, but it was often challenging to do so.

The Importance of Remembering Siblings

This is my story about growing up with a sibling with multiple disabilities. Perhaps a parent reading this may remember how very crucial it is to make time for the siblings of children with disabilities. Perhaps a sibling may reach out to a parent to let them know he or she wants to help and be part of the family as a whole.

Try to make time for everyone; you’re all in this together, even if it does not mirror what you thought “family” should look like. Reflection is so painful because it shows our deepest human flaws. Without reflection, though, how do we find the togetherness in these flaws?

Author: Sami Winchester • Date: 9/15/2017

About the Author

Ms. Winchester is a special education teacher of varying grades and abilities. She resides in Massachusetts with her husband and children. She lives less than a mile away from Anna.

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