Culture Shock

Yesterday we met with an amazingly sweet woman from the local Down Syndrome support group. She is fabulous. When she first called, we weren't home, so she left a message saying she didn't know where we were emotionally, but that if we wanted, we could come to the pool party that night. (Extra parties?! Definite bonus!) We opted for meeting privately first and learned a lot.

I knew this would be a challenge, a journey, a transition, but for some reason, I was taken off guard by a completely unique culture. Here are some of the things I learned that surprised me:

Mongolian Idiot. This used to be the psychological classification for Down Syndrome. Mongoloid or Mongolian refers to the tendency toward slanted eyes. Idiot was the classification for the mental retardation. Wow. Once again--so glad to be here in my decade instead of 30 years ago.

Delayed. This is the preferred term. Over retardation or mentally handicapped, the preferred expression is to say that the person is developmentally delayed. This has more to do with the stigma of 'retarded' and the negative associations it brings rather than it being an inaccurate term.

Downs Child.  As in "This is our Downs child/baby". That is a big no-no. The woman who spoke with us admitted her husband still says that sometimes, though their daughter with Down syndrome is grown-up and attending beauty school. (I can't actually imagine introducing Lizard Loaf to anyone that way.) I guess the reason this is a problem is because it defines the child by the disability. As it says in all of the literature, a baby is a baby first. And, a person is a person first. I wonder if it would bother me if someone introduced me as their Clumsy friend, or their Non-athletic cousin--defining me by my greatest weaknesses and struggles, rather than my strengths. I think it would. I'm new to this culture, but the shortening of Down Syndrome to Downs doesn't bother me right now, as in 'my son has been diagnosed with Downs' instead of writing the whole thing out every time.

There are a few attitudes that have also startled me, all with surprising religious roots. These didn't come from the support group information, and I don't know if these attitudes are common in this new culture or isolated to the people expressing them, or perhaps common among Mormons, and less so among the general population. I hope I don't offend anyone by highlighting these.

• This comes from the mother of a child with Down Syndrome, relayed through a friend: "It will be interesting when we get to Heaven and we all get Down syndrome because that is how it is to be perfect." Wow. That really took me off guard. It never occurred to me that anyone would think that way. For myself, I tend more towards Urban Tangerine's perspective that this is temporary struggle. In the next life, my son will be made whole. As I understand it, people with Down syndrome tend to be naturally loving. I've heard they are more unconditional in their love, the way our Savior would have us be. Developing charity is vital, but I don't think that is the only part of perfection. I also don't think we are made perfect automatically in the next life. We still have to struggle towards it from wherever we left off in this life.

• I've heard this attitude enough that I won't attribute it to any one person. The general idea is that people born with Down Syndrome must have been especially valiant spirits before they came to this life. That's why they were given Down Syndrome and guaranteed salvation. I know that even among my sisters, we don't have a consensus on this point. While I found nothing about this when searching through articles on LDS.org, my personal feeling is that the challenges we receive in this life are not a reflection of God's judgment. It may be that a particular child was given Down Syndrome, or died young, or any number of things that would guarantee his or her salvation, because of this very reason. I believe parents may have inspiration on this point for their particular child, but I don't think we can know universally why these sorts of challenges occur.

• In conjunction with the previous attitude, I've also found prevalent the idea that parents of a child with Down Syndrome are superior. Again, I think the challenges we receive in this life are not a reflection of God's judgment, but that we will be judged after the trial. I feel very strongly that Heavenly Father knows my family, including my son, and our situation. In fact, over two years ago, I had the impression that I was going to have twins, that one would be a boy, one would be a girl, and that the boy would have Down syndrome. But then, I proceeded to have three miscarriages, so I let go of those impressions. They have started to seem relevant again (though still no sign of twins...). I take great comfort in knowing Heavenly father is aware of our situation. We will do our best to provide a loving home for our son, and help him prosper (just as we do for our daughter). But I don't personally feel that receiving this challenge as a parent indicates that I'm 'more righteous'. Neither do I feel that this is bad karma coming back to bite me.