adoption

“it’s such a hard thing to explain, anyway, because, there’s no word, like ‘she has this or that’”

Over the course of the past two months, I have become very conscientious of the role that language plays for me in my life. Language is the basis for most of my communications, simple and complex, and provides me with stepping stones that lead to paths that lead to decisions and my growth. So what happens when language is not an option?

Before my sister was diagnosed as on the autism spectrum (Pervasive Developmental Disorder-Not Otherwise Specified/PDD-NOS), I faced many challenges associated with describing her to people. Of course, I could always spew out her learning disabilities but those never came close to depicting and illustrating her intense behavioral issues that defined life at home. Now, even though autism does not explain her in the slightest, at least I have a word to use that the general public is fairly familiar with. We spoke with two college students in California who do not have the luxury that I now have when I describe my sister to people. Interestingly, all three of our siblings share common ground behaviorally. We spoke with Mike* and Emily* who both have middle school-aged sisters. Mike’s sister is a 13-year-old twin and has been diagnosed with depression but is currently undergoing a new diagnostic assessment relating to her behavioral problems. Emily’s sister is also 13. Her sister was adopted when she was 2 from Russia and has many learning disabilities, processing issues, and attachment difficulties.

Both Mike and Emily talked in great detail about how hard it is for both of their families to constantly struggle with household peace. “All of the behaviors she has are like relatively normal things. If they happened once,” Mike said, “but because they happen so many times, they end up having this huge impact.” He told us that his family has given up on the concepts of family dinners or vacations due to his sisters rages about minute details (like specific foods at the table or not being able to see because someone was in front of her). Emily talked about how high school became increasingly difficult because she was unable to do her schoolwork due to the constant screaming and tantrums her younger sister still throws.  They both talked about the maelstrom that has been growing up with their sisters because of such intense behavioral problems.

How can a sib describe their sibling when they don’t have a name to quantify or qualify the amount and extent of their siblings’ behavioral difficulties?

“How much of this is actually some diagnosed thing? Where do you draw the line?” Both Mike and Emily discussed the dubiety associated with trying to figure out if their sisters’ behaviors were due to cognitive issues or their sisters’ personalities. When the two of them have tried to explain their household chaos to others, they literally find themselves at a loss for words. “People don’t get it and they judge me for being mean to her,” Emily observed. “I always feel like a bad person for disliking her so much… and it affects how I view myself now.”

“It was both frustrating and scary. Because on the one hand, I was like I don’t want to be like her, but at the same I was like, well if I feel the same way as she does about all of these things and I manage not to destroy our family, I don’t know why she can’t do that.”

These interviews brought on something we hadn’t quite encountered yet on our journey. How can sibs identify as sibs when they themselves don’t even know what is truly going on in their sibling’s minds? Though I strongly believe that diagnoses and epithets have drastically changed the face of the disabilities world in a multitude of positive and negative ways, I do believe now that, at least for sibs, there is some comfort in being able to have a piece of language that begins to identify the complications that go along with being a sib.

*Name has been changed

Ellie

Family is Family

When Catherine was 9 years old, her family adopted her younger sister, Jessica, who was 6 at the time. Jessica had been living with her for a few years prior as her foster sister. Jessica is on the autism spectrum, but is high functioning and currently living independently. She has PTSD and a few other diagnoses. Catherine's story is an example of the difficulties that often occur with adoption. "She is really hot and cold with people. She loves you one day and hates you the next day.She just doesn't care. That makes it difficult for her to get along with people and just have stable relationships."

When she was younger, Catherine took on more of a parent role instead of a sibling role. She wanted to protect her sister since she had been through a lot of trauma in her early life. As a result, they never built a close sister relationship. As they got older and closer to their teenage years, they became a bit closer and friendlier. They never had a very good relationship.

Catherine sounded a bit remorseful and sad as she explained how her family hasn't been in close contact with Jessica for a while now. Jessica has been to several residential treatment centers, which didn't work out, so she is currently somewhere in Kentucky, but her family isn't sure where.

"You never knew what you were going to get" seems to be the phrase that best describes Catherine's childhood. All of her friends knew that going to their house could be a bit crazy. "She is explosive sometimes, and crazy and violent. You just never knew what was going to happen when you came over to my house." She spent a lot of time away from home because of that.

Nevertheless, she always felt as if she needed to be looking out for Jessica, and that trait has carried over into her adult life. "I always put others ahead of me and my own experiences and that isn't really healthy."

As far as plans for the future go, it is going to be up to Jessica and how self-motivated she can be. "At this point we've forced so many resources into her and she's gone to four different residential programs now... She doesn't even want to participate and make positive changes, so its just kind of disheartening for my family to see that and to know that there's not that much else we can do until she decides things are bad."

Though her sister's adoption doesn't make her any less like family, it is a tough thing for Catherine's family to deal with. "Growing up, sometimes she would say 'You're not even my real family. Why should I listen to you?' Hearing that over and over...it was really tough... I'm sure she doesn't consider us her real family, whatever 'real' means." Catherine expressed how difficult it is to be there for someone who doesn't want you there, but no matter what, her family will always be Jessica's safety net.

Renee

1 Household, 2 Perspectives

About a week ago we met with a family in the suburbs of Atlanta. The mother adopted  their eleven-year-old daughter when she was four years old from a special needs orphanage in Nicaragua.  Their daughter has a non-malignant tumor in her cerebellum that affects motor and cognitive functioning, variants of the Dandy-walker Syndrome, traumatic brain injuries from early childhood, and a brain atrophy from malnutrition from before she went to the orphanage. Although she has no behavioral issues, her IQ is very low and she functions at a kindergarten or 1st grade level academically. We spoke with all three of her siblings, two of which are step-siblings. I (Ellie) will be covering her full sibling and Claire will talk about one of her step-siblings. The first daughter we spoke with is 7 years old and, as her mother described, at the opposite of the intellectual spectrum as her older sister. She is part of the talented and gifted program at her school and functions at levels beyond her grade level in school subjects. When we asked her about her relationships with her step-siblings, she was very detailed and animated in her descriptions of how they interact together. However, when speaking about her older sister, she was less articulate and unsure of how to depict her relationship with her. She told us that, in referring to her sister, “she sort of understands stuff I say” and “she reacts different than me and I don’t really know what to do.” She said that “it’s different” to play with her other siblings than it is to play with her older sister. “She has a different life sort of and I don’t really know what to do,” the seven-year old told us.

The mother of the family assured us that this seven-year-old will not be her sister’s caregiver later on in life. In contrast to the other child interviews that we have conducted thus far, this girl did not have unwavering positive attitude regarding her sister, which is something I identified with. It was clear from our interview that she doesn’t regard her older sister with buckets of love and compassion and she still isn’t completely sure how she fits into her life. Though so young, she is still figuring out how to even talk about her sister, something I am still having trouble doing. I think that it is important that we have more of these diverse interviews, those that push us to think harder, widen our information pool, or even make us uncomfortable. From this interview, we can really see how sibling resources are vital, so that girls like this one can learn to talk to people about their siblings and gain support from those that understand her.

As Ellie explained, I will be blogging about the 12-year-old stepbrother in this family, who I'll be calling Peter in this post. I want to start by saying that Peter was certainly the most mature, thoughtful, and thoroughly kind 12-year-old boy I have ever met. We'll never know if Peter was naturally this way or if his experience as a sib had shaped him in this positive way but it was clear to us almost immediately how much time Peter spends thinking about his stepsister.

At first, when we asked Peter to describe her, he noted that she was extremely kind, happy, and was able to get along well with people, a trait his other sister also noted. However, later when we asked Peter about if he ever worried about her, he noted that he often envisioned her as a wounded gazelle, in his words "she is hurt but she can still fend for herself". Renee, Ellie, and I were all blown away by this thoughtful response as we had all been expecting a much less colorful yet accurate response than that.

Despite the fact that the siblings don't talk to each other that much, Peter told us that he would "hug her every now and then" and would help encourage her to socialize with her sisters and with her classmates. When we asked Peter a general question about the future, he quickly made it clear that he already thinks of how he will continue to support and encourage his sister as they both age and mature. As with most young sibs we've talked to, Peter had not spent much time talking to other sibs about his experience, though he did tell us about his friend at school whose younger brother is in Peter's grade and has a disability. Peter told us that he's very good at including this boy, whom he considers to be a good friend, and always makes an effort to sit with him at lunch and socialize with him in general. I don't want to over do it in my praise of Peter, but there certainly weren't that many 12 year old boys at my school that made an effort to include kids who struggled more socially so his tale of inclusion definitely warmed my heart.

We always close each interview by asking the sibs to tell us one question they would want to ask other sibs. Often, sibs ask Ellie and me to share our "sib story". Peter surprised us by asking the following:

"What would it like to be Mary* for one day, how would it be to think like her or just be like her, to think like her, to see like her, to see everything in a positive way but still not be able to do that thing?"

I am so grateful for the opportunity to have met and talked with this young man and to have gotten the chance to hear his wise-beyond-his-years comments about his relationship with his special sister.

Ellie and Claire