DrUsual

You'd be amazed at how often this question comes up in the Down community, and I suspect in other similar communities. It's obviously a very personal choice, and I definitely don't want to start a debate about politics, legality, or anyone else's philosophy of where life begins.

I'll share with you my personal thoughts on it:

1. Personally, I'm pro-choice. (Don't bother PMing me to discuss or criticize this, please.) If I had known ahead of time, I probably would have considered. (And btw, I'm speaking for just myself here, not my wife.)

2. Though I say I would have considered it, I can't tell you that I would have been willing to do it.

3. Now that we have her, it's impossible for me to imagine not having her. I can tell you that if someone offered me a chance to go back seven years with "what I know now," we'd still have her.

I prefer to turn the question around to, "What will life be like with a child with Down Syndrome?" My answer to that is, "It will be challenging no matter what. If you want it to be, it'll also be wonderful."

My older daughter is excellent with her younger sister. She was four at the time, and we didn't try to explain Down to her until she was ~6. She understands that most fundamental piece: everything requires more patience.

So, I'd say that for the most part, she treats her sister the same way any other girls do. They play together, they bicker at times, she's annoyed by her sometimes. She also takes care of her little sister admirably; including her at times that she might otherwise sit out, helping her make a snack, doing her hair and makeup, etc.

The only real difference that I see based on my younger one's DS is that my older daughter is cognizant of potential challenges. She's seen people stare at her sister, and though she hasn't run into anyone being outright mean to her, we've talked about how to deal with it if it happens. She's far more aware of leukemia than the average ten year old, since our friends' son has it and we're just passing through the most critical age for likelihood in our younger daughter.

Overall, I'd say that DS has raised my older daughter's academic interest in all sorts of topics, but when you get down to the day to day business of being a big sister, she doesn't see her little sister as anything other than that.

We both found out in a pretty crappy way. Ultra short story is that my sister in law was bringing my wife and new baby home, and I was already at home with the older daughter. The doctor stopped my wife in the hallway and said, "Your daughter has Down, call my office Monday if you have any questions."

I found out at home when my wife took me out to the garage and filled me in. I reacted very poorly. I knew our age (34) put us in a "higher likelihood" category, and we were familiar because our best friends already had a son with Down. So, I'd just settled into a "everything went okay" kind of relieved feeling before she told me, and I pretty much felt like I'd been shot.

I had about 12 seconds of outright denial, but knew there wasn't much ground for dispute. As soon as I could that afternoon I went over to see my friend who'd already been through this; I think the direct solidarity helped me get equilibrium better than anything other than sitting and holding the baby.

Second reply for the other question, in case that spawns questions.

This is a great question. We're very fortunate that everyone in our school system has been a great partner. Here are some specific pieces of advice for SE and inclusion teachers:

1. Understand that it's easy for parents of special needs children to be confused and intimidated by the education system in general, and ARDs and IEPs in particular. Even with great help from groups and individuals, the ARD process can add a lot of stress to the parents.

2. Be aware that the parents are very often self-conscious about the fact that they're asking for something "special" for their child. It's not uncommon to feel inexplicably ashamed of the situation and very aware that "our family is different." You can imagine that that feeling can lead to unintended behaviors or again, stress.

3. Be honest with the parents. We all want the best possible situation for our particular special needs kid, but we're also aware that our situation puts stress on a system designed for typically developing kids. We may seem unreasonable at times when we're really frustrated by having to balance those two things. Having good, honest communication with our educators helps a lot.

4. Be open to out of the box thinking. Again, we're cognizant of the strain we put on the system, and very often we're willing to go to great lengths to help with a solution when we have good parents. Example: many special needs kids are enabled by tablets when they can't hold a pencil or write. Can't have a tablet in the classroom unless we have 15? No problem -- if you'll work with me on using the tablets, I'll work with you on figuring out how to fund 15 of them.

5. Don't use our kids' special needs as a cushion. One trite comment that I hate is that "people with Down are all little angels!" I've got news for you -- my little angel can be a complete shit sometimes, just like anyone else's kid. Yes, she needs more patience and repetition than the typical kid, and sometimes we have to try two or three approaches to make something sink in. However, she still needs discipline, she still needs to learn, and she still needs to realize her potential. Don't let her "get away" with anything just because of her special needs. :)

That's a great question, and I think it's something people should think about without feeling defensive. The answer is certainly, "It could."

We're very careful to divide time up so that my older daughter doesn't feel slighted or ignored. For instance, every summer, my older daughter and I do a week long adventure trip somewhere; we take a road trip, go hiking and climbing, visit another city together, etc. We have weekends that I'll do something with my younger daughter while my older gets one on one time with my wife, and we make sure that the older one is fully supported in her interests; dance classes, choir, robot camp, piano, etc.

Besides ensuring that they both get one on one time with us, I think it's also important that we don't use Down Syndrome as an "excuse" in any way -- it doesn't excuse my younger daughter from behaving well, it doesn't excuse my older daughter from any of her responsibilities, etc.