When I was growing up talking about death or disabilities of a sibling was not a done thing. I knew my eldest brother was different. He was scary brilliant…in some areas, he perseverated about two high interest/high knowledge topics. He had a slightly awkward walking gait, but running? He was a hot mess. He did brilliantly in academic subjects, but he was the last to be picked for any sports team in Phys-ed and he was made fun of by the jocks. He was also sixteen years older than me, so, impacts were not as immediate as they would have been if he was closer to me in age.
The brother born 17-months after me, died when he was 9-days old. We rarely ever spoke of him in our family, and if we did, it was my dad and me. As I said talking about death or disabilities of siblings was not a done thing when I was growing up.
Fast forward to the start of a new family. Andrea was 22-months old when we had Sheila. I was racing the ‘at 35 the chance of having a child with DS went from 1 in 700 live births to, 1 in 100 live births’ clock. I was 34 when we had Sheila. In March of 1988 a picture book was published from the perspective of siblings loving and helping their brother. The support organization we were involved in bought many copies of it. We started including the story in the new parent packets for families that had a baby with DS.
We got a copy of the book so that we could start explaining what Down syndrome was to Andrea. It would be read again when Colleen came along. I didn’t want my children raised in a family that didn’t feel free to talk about anything that was bothering them. I knew I could never prevent them from the slings and arrows of life’s cruelties if Sheila was picked on, but I wanted them to know they were not alone.
Is the impact of a sibling with a disability greater and does it cause more jealousy, resentments, anger, or hurt feelings for the typical siblings than a family with no disabilities? As one of my daughter’s put it, “Growing up with Sheila and her disability was my normal.” Both Colleen and Andrea had their times when they were close with Sheila, and they had their times when they maintained a distance from her. When Andrea and Sheila were very young, they played together, but the intellectual, physical, and emotional growth and needs of Andrea soon left a large gap between them.
Along came Colleen who was four years younger than Sheila. Colleen and Sheila had about four years before Colleen’s skills and abilities started out pacing Sheila. Colleen’s skills and abilities accelerated rapidly after she reached kindergarten.
When the girls were 8, 6 and 2, Sheila and Colleen were becoming best buds. Colleen was not talking yet, but she had learned Sheila’s sign/gesture communications and the two of them carried out their own form of talking with their hands. I had Colleen tested for speech issues because of the history of a grandparent that did not talk until he was 4 years old, and both older siblings receiving speech services. Colleen qualified for speech and to a lesser degree had some of the same auditory processing and motor planning issues that Sheila had. By kindergarten Colleen was able to be discharged from speech services.
Six months into speech services Colleen was finally beginning to talk. At this point Colleen started acting as interpreter when Sheila was trying to tell us something we didn’t understand. It was bizarre watching these two tiny girls flashing signs back and forth and then Colleen piping up, “Sheila wants…” and then proceeded to tells what she wanted.
At 8 years old, Andrea started withdrawing and becoming even quieter. She was never a noisy rambunctious child (not unless she had bagpipes in hand and was playing them). But her pulling inward became more intense. I had slipped into a depression at the age of eight and seeing signs of this in Andrea scared me. Getting her to talk about what was wrong was a challenge. I was losing her bit by bit. It came to a head one hot summer day when she refused to come out to the pool to swim with the others.
Instead, she elected to stay in and clean her room. At the time she shared a room with Sheila. Sheila kept her part of the room neat. Andrea did not. That evening, I asked Forrest to read to the two younger girls and let Andrea know we needed to know talk about what was going on. She blurted out that she hated Sheila, and she was mad because we weren’t punishing her for hating Sheila. I had forgotten about this conversation. Afterall for me it was a little blip in our family life – from my perspective – but she reminded me of it when we talked about this blog.
During that long ago discussion I talked to Andrea about it being okay to feel resentment or anger towards a sibling at times, but she did need to be kind to her. I then reached out to Sheila’s service coordinator to see if there were any resources that might help us. We were able to get a few months (3-6 months) emergency family counseling and the counselor would come to the home.
In our conversation this week, Andrea recalls that as an 8-year-old she, “realized I didn’t have to love Sheila, but I needed to find something to appreciate about Sheila.”
It was around the time when Sheila was six and Andrea eight that there were a few kids on the bus that started bullying Sheila and making statements about our family being “the family with the retard.” [Per this blog conversation, Andrea was also being bullied.] Our children had to cross our road to get on the bus. After I had heard this, I walked the girls across the road and got on the first steps of the bus. I told the bus driver I wanted the names of each of the kids using the “retard word” and doing the bullying. I announced even louder that I would be reporting each name to the principal and superintendent at our meeting that day. “Bullying children is not acceptable behavior and I know the superintendent would be interested to hear who is doing it.”
One neighboring child came up to me and stated she was one of them. I looked at her and said, “I bet you’ve been bullied, haven’t you.” She wondered how I knew. I asked her if she liked being bullied and she admitted that she didn’t. She then eagerly threw a few other kids (figuratively) “under the bus.”
Adult Andrea stated, “I put these kids [the bullies and ‘mean girls’ that would appear in her life in middle school] on my cease to exist list.” She further explained she didn’t get into fights with the mean kids, they weren’t worth the energy. She told me she would look at the person hassling her, give them “you’re not even worth a ‘talk-to-my-hand’ gesture” and then she’d walk away. Once Andrea started in middle school, she would often play a popular strategy card game with boys in her class. Girls that had at one time been friends had become mean girls to rival the movie with that title. But no worries, Andrea had heart throbs of the middle school sitting with her playing strategy games during lunchtime.
There was one lunch table rule: “anyone can sit at this table as long as you follow one rule—be nice. Even if you are bitter enemies with someone else at this table—don’t sit next to them, but just be nice.” ‘Just be nice’ had become Andrea’s one guiding principle. It was during the late elementary – middle school years that Andrea became familiar with the poem, “The Road Not Taken.” Along with the phrase, just be nice, the last line of what has become our poem, “I took the one less traveled by, and that has made all the difference.”
Finally, Andrea shared she became more aware of how interactions impact other people. As she continued to mature through high school she learned to love her annoying middle sister, she learned to compete with her youngest sister and she became more deliberate and intentional in how she responded to teasing, bullying and other negative behaviors. Andrea also stated she became stronger in her convictions, “I took the road less traveled by…I’m taking the alternate path. Having the Frost poem in my head gave me permission to appreciate the path I was on.”