Wednesday, January 12, 2011

Nephews, Sons, and Twins

While growing up, my twin sister and I were told that our kids (when eventually we had them) would really be half-siblings because, as identical twins, our genetic makeup is the same. I don't know how true that is but certainly, on an emotional level, her kids feel more like my own children than "just" my niece and nephews. They look like they could be brothers and sister. And when they get together they play and fight more like siblings than cousins, whether because of strong personalities or because their cousins' "mom" looks so much like their own.

But I shouldn't really say they fight like siblings--not all of them do. While my sister's only daughter fights from time to time with my two older sons, our boys (hers and mine) don't fight with each other at all. In the unpredictable script of life that neither she nor I wrote, my sister has two sons with autism.

How that plays out in daily life is shared in her blog posts,
this being the most recent one. How it plays out for me, as aunt/mommy-look-alike to these three precious children, is what I have to share today.

My first nephew, Andrew, was diagnosed when he was two, just after his family had moved back to Idaho (a good 600 miles away from us). He was born just four months before my second son, Finnian, so during their early years my sister and I naturally compared developmental milestones. Autism began showing itself through the milestones we couldn't share. In the first year, it was a perverted source of pride for me. I was proud that my Finn was so "advanced" over his four-month-older cousin. But that pride quickly and painfully soured as the years went by and Andrew remained unable to speak, steadily retreating into himself. Deafness, then autism began to be suggested by Andrew's doctors as possible causes.

Autism was a mystery to me, a nebulous disease imposing a nebulous sentence on my sister and her family. Ultimately, to her devastation and our family's deep concern, Andrew was officially diagnosed with autism. With him and his family far away, I heard the diagnosis numbly, disconnected and shielded from the reality of its impact on his day-to-day life. Short of uprooting and moving to where they lived (which both she and I continue to suggest to each other), supporting my sister as I wanted to--cooking, babysitting, coffee dates--was impossible.

My second nephew, Jeffrey, was born just before Andrew was diagnosed. My sister's pregnancy with him was difficult, and we all thanked God when he was born apparently healthy. Quickly, for reasons inexplicable to me still, Jeffrey ended up with two conditions requiring surgery before his first birthday: one for a hernia when he was three months old, and one for a prematurely fused soft spot when he was about six months old. Developmentally Jeffrey was also behind, but the trauma of his surgeries at such a young age made us all believe--made us all hope--that the developmental delays were just delays.

The statistics of autism are something like 1 in 110 for all children, 1 in 70 for boys in general. When there is already a boy with autism in the family, the stat shoots up to 1 in 20. Once Andrew was diagnosed, my sister watched Jeffy like a hawk, worrying over every missed milestone in the event that he, like his brother, would be diagnosed with autism as well.

And he was. Around his second birthday.

His diagnosis impacted me far more than Andrew's. Autism was no longer nebulous to me, it was a visible reality. The few, short periods of time I was with my sister showed me the difficulty with which routine change, food change, change in general was received by Andrew. What would it be like for both Jeffrey and Andrew to be bound by autism's inflexibility? What would their family be like?

Years have passed. Autism has proved difficult, but not impossible. Therapy, changes in family life and structure, and special schooling have wrought great improvements in both Jeffrey and Andrew. My sister and her husband have learned, and are learning, how to be the best parents they can be to the children they have been given.

And this past summer, with my three boys in tow, I got a crash-course on how to be a good aunt to the niece and nephews I have been given. I shared life with my sister and her family for two weeks, going at that particular time for three reasons: first, because I wasn't working and could finally go for a long period of time. Second, because it was my namesake niece's sixth birthday. And third, because my sister was having a minor, in-patient surgery and needed some adult back-up while she recovered.

So I became the back-up. I cooked food, struggling to find something that Andrew's autism-sensitized palate could accept. I cleaned up messes, sometimes forcibly taking away my nephews' most precious possession so that they (or the house) could be cleaned. I changed diapers. I witnessed the late night "stimming" that keeps Andrew (and his parents) from a good night's sleep. I received frustrated yells when I couldn't discern the needs Jeffrey and Andrew wanted so badly to communicate. I held Andrew's hands and arms while his parents cut his overgrown hair, blocking out his terrified screams as best I could (that, I confess, was the most traumatic part of all).

And yet...

I laughed longer and louder than I have in years with Andrew, listening to the joy-inducing sound a balloon makes when it gets caught and whipped around by a ceiling fan. I watched my oldest son try and speak in "Andrew talk", doing his best to communicate in one and two-word phrases what he thought his cousin would understand. I lay down with snuggle-happy Jeffrey during the day when I tried (unsuccessfully) to have him take a nap.

And of course, I got to care for my nephews when my sister was not physically able to do so. And it was then I received the surprising, unearned gift of being an identical twin to the mother of children with autism.

Jeffrey and Andrew couldn't--still can't--tell the difference between us. When my sister and I are together, as we were for those two weeks, she is Mommy and I am Mommy. Autism apparently renders that unproblematic. One of us was necessary, but either of us would do. I was a means of love and comfort to those two boys while their Mommy was away, and through no more merit than having the right face at the right time. Andrew and Jeffrey didn't care so much that I could make their food and get them dressed as that I could hug them with "Mommy's" arms and kiss them with "Mommy's" face. Who else gets to do that? In what other circumstance could a stand-in caregiver become "Mommy" without question or complaint?

I am thankful for my nephews, as they are. I am thankful for my sister and brother-in-law, who work hard to be good parents for their sons, as they are. None of us, after all, write the script we are given; none of us chooses the challenges that arise in the simple business of living and giving life. But as my sister reminds me frequently, through the words of our shared hero Gandalf the Grey: All we have to decide is what to do with the time that is given to us. The people given us. The circumstances given us. The life given us, as it is.