"Wrongful" birth... ug.

Ug. I read this article this morning, about 2 families in Australia who are suing over the "wrongful birth" of their children who have Down Syndrome. Where to begin with this? I guess the punch to the gut is the idea that someone would think that the birth of a child like mine is wrong. I feel defensive, for myself, and for my child, my sweet, engaging, funny little boy, who can light up a room with his laugh and who certainly does not suffer with his disability.

I know that having a child with disabilities can be hard. A child like mine will have developmental delays, which become developmental disabilities as he gets older and it is clear that he will not "catch up". And, yes, health issues. And, no, he's not potty trained within the typical time frame. I guess the parental anger is understandable, part of the shock of the diagnosis, the knowledge that your child is not going to be able to do everything you had hoped, that there will be challenges. And in a litigious society, when we have anger, we look for someone to blame. If these parents blamed themselves, they couldn't very well sue their own cells for dividing improperly. So they are suing the hospitals for failing to discern the diagnosis in advance of birth, failing to give the parents the option of termination.
I believe in a the right of parents/mothers to terminate pregnancies if they decide that any child would be too much, or that a child with a specific condition would be too much for them to handle. If parents really feel this way, they should probably do some research and have a dialogue with their medical team about the incidence of specific disabilities, and about accuracy and risks of testing. The medical team does have an obligation here to provide the best care and testing available if testing is desired, and to provide good explanations of the risk of a disability and accuracy of the tests. I have no idea how these medical providers handled their part of this. It sounds like there may have been more they could have done. Certainly there exist more accurate tests than ultrasounds. However, people are going to have imperfect kids. If not DS, something else. Autism. ADHD. Traumatic brain injury. Cerebral palsy. Epilepsy. Stuff happens. As a prospective parent, you need to be aware that stuff could happen and you might have to deal with it. If stuff happens and you really feel like you cannot cope, there is support in various forms, or there are foster families and adoptive families who truly love special needs kids. Really. I know some of them. If you can't deal with the idea that stuff happens despite your best wishes and attempts to prevent it, may I suggest you reconsider the idea of becoming a parent? Kids do not come with guarantees. The doctor didn't manufacture your child, and you cannot take it back if you think it is "broken". No refunds, no exchanges. You just love the ones you get. Most of us don't choose to become parents of a child with disabilities, but most parents I know love the heck out of their kids and don't consider it "wrong" that they were born. Many of us move past the anger and find the positive in a situation that we didn't seek out, but a situation which turns out to be less horrible and more wonderful than anticipated.
If you have this "imperfect" child, and you decide keep this child in your family, and then you sue doctors over the very fact of this child's life, what kind of message does that send to your child (and your other children, and the rest of society) about the value of a person with disabilities? As a child, how awful must it be to know that your parents actively wish you had not been born? Ug.

"snoat"???

Nathan is telling me things. I just can't always figure out what he is telling me. Recently I was holding his straw cup and giving him a drink and he told me "hungry self" (or was it "hungry salt?"). Spent a while trying to figure out if he was indeed hungry, if he wanted a snack, etc. He did not seem interested. Later on I realized that I was probably telling me he wanted to hold the cup himself (hungry being in fact thirsty or drink, and self being, well, self).
He has also been saying something that sounds like "snoat". "Snoat, snoat", says Nathan. "Snowed?", I asked, perplexed. "Snoat." "Tell me more about it." "Snoat." "Snort?" "Snoat." Huh. He has said this when getting out of the high chair, he has said it last thing before falling asleep at night, and he has just come up to me in the living room and said it. I have NO clue. It's been a couple days and it has not become any more clear to me. I am a Nathan-language detective. I speak Nathan about as well as it can be spoken, I think. Last Christmas it took me a day or so to figure out that "ah see what" was in fact the Bob Marley song "Exodus". And that's a crazy thing to figure out. But "snoat"! I have no clue. he hasn't given up on me, though. He keeps saying it. Perhaps he figures eventually I will get with the program.
People have asked me if we do sign language, since kids can usually sign before they can speak, and this might clear things up. Nathan says all the words he signs, and I believe that his words are actually more clear than his signs. This is the ASL sign for Daddy. Nathan will touch the back of his head with both hands (very similar to how he shows where his head is, and bearing a similarity to his "great white shark", too). If he didn't SAY Daddy at the same time, I wouldn't be able to understand that as a sign. And IF he signs Mommy, he touches MY face. Unusually in someone with DS, I think his verbal skills are better than his motor skills, especially fine motor skills used in signing. Of course, he does do some of the hand motions for some songs, but he much prefers to take my hands and make me do them. And neither one of us can keep up with Captain Valor!
So while sign language is useful, I don't think it will help me with "snoat". I'll just have to keep listening and look for some context and wait for that "aha" moment. Since I'm sure you're all in suspense and on the edge of your seats over this one, I'll update when I get it figured out. :p

More little successes

When everything is a little harder to do, each success becomes so important in my eyes. Fine motor skills are such a challenge for Nathan that being able to do the 2-step process of eating with a spoon (spoon into yogurt, then into mouth) a few months ago was a huge accomplishment. The child makes a mess, but he can feed himself.
Gross motor skills have been a challenge too, but lately Nathan is all about climbing into the car and into his own car seat. Two days ago, holding my hands, he walked up 2 of the 4 steps on the school bus. Yesterday he did all four. They are big steps and he needs a lot of support to do this. He got to the top, turned to me, and lifted up his arms. "You don't want to walk back to your seat?" I guess not. He did the hard part, it was done, and then he wanted me to carry him. Today, though, he did the steps, walked back to his seat, and with only one little boost climbed up onto the bus seat and into his car seat! So independent!
He's climbing up into his stroller also. If we're going for a walk I can ask him to climb up and he will... unless he disagrees with the plan about going for a walk. He also will go sit in his stroller to let us know it is time for a walk!
Language and communication also continue to unfold. Nathan and I were playing with cornstarch and water (this is LOTS of messy fun, by the way) and he looked at the messy white mixture all over his skin. "Lotion," he said. Lotion? Wow, yeah, it looks like lotion. And I didn't even know he knew that word!

Using words

Nathan's verbal ability is one of his strengths. He can pronounce many sounds, sings pretty much constantly, memorizes and recites phrases from his books, and repeats things like a little parrot. This is wonderful. BUT... I'd really like him to be able to communicate what he wants or needs. What often happens is he gets upset and starts to fuss and cry until I figure out what he wants. If I put on music and it's not what he wanted he'll cry until I put on the right music. Asking him "do you want x? Do you want y?" yields no answer, or he'll repeat back the last word I said but cry harder when I put it on since it is not really what he wants. Sometimes I can figure it out (crying ensues when I say it's bathtime or we're going grocery shopping) and sometimes I can't (Does something hurt? Are you hungry? Do you want me to sing? What???).
Today we've had a few communication successes. These might not be big to anybody with a typically developing kid, but to me they are huge.
This morning, Nathan got up, went to his room, and sat in the rocking chair. I asked him, "Do you want Bob (Marley)?". "Music", said Nathan. "Rocketship". He didn't want Bob. He wanted Laurie Berkner's Rocketship Run. And he told me so!
Later we went grocery shopping. As I was putting groceries away, Nathan came into the kitchen and grabbed on to my legs. Coming into the kitchen and attaching himself to me usually means he is hungry. "I'm going to make lunch", I told him. "Do you want..." I was about to give him a choice, figuring he'd repeat back the second of 2 options. "Yogurt", he told me. Awesome. Nathan had yogurt for lunch.
Later, when I told Nathan it was time for dinner, he said "luff. luff." "Love? You love dinner?" "MEATluff!" "Oh, honey, meatloaf requires preparation; it is not a last-minute order. We're having fish." Just because he can request appropriately does not mean the request can always be honored!